India’s Guttate Psoriasis & Psoriatic Arthritis Story: From Flare-Ups to Self-Love
India’s experience with guttate psoriasis and psoriatic arthritis (PsA) is as real as it gets — messy, emotional, painful, and also full of growth, learning, and self-love. Diagnosed with guttate psoriasis in 2018 and with psoriatic arthritis in 2022, India didn’t always have the knowledge or support she needed. But now, she’s using her voice to advocate for awareness and self-acceptance, and to end the stigma surrounding these autoimmune conditions.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
India’s first symptoms started after a bout of strep throat during college. What she thought were bug bites turned into patches spreading across her legs, face, and ears. A visit to the doctor confirmed guttate psoriasis, a form that infections can trigger. From there, she was prescribed topical steroids, which became her go-to for years, even though they eventually stopped working and left her overwhelmed and confused.
In 2024, things got worse. After catching strep again (plus COVID and the flu), India’s body went into full-body flare mode. Steroids made her condition worse, so she turned to UVB light therapy, supplements like turmeric and vitamin D, and dietary changes. The result? She’s nearly clear now — not just physically, but emotionally too.
Managing visible flare-ups, especially on her face, was incredibly hard. People pointed, laughed, and made hurtful comments. But India found strength in self-love. She says, “Your skin doesn’t define you,” and she truly lives by it. The stigma began to break when she stopped hiding and started educating others. Now, when someone comments, she uses it as a teaching moment about psoriasis, helping to replace fear and misunderstanding with compassion.
India’s psoriatic arthritis diagnosis came after intense swelling in her foot, fingers, and hips. It was initially dismissed as being pregnancy-related. With a gene mutation that prevents her from taking methotrexate, she leans on holistic treatments like UVB, heat packs, Epsom salt baths, and careful diet adjustments.
Emotionally, India experienced rough patches. Pregnancy during flaring was one of the hardest periods. Still, she found hope in her children, her supportive partner, and a deeper understanding of her worth. “I love myself,” she says, “and I’m okay with myself.” Her message is clear: You can thrive with an autoimmune disease. Your diagnosis doesn’t change who you are — it just adds to the layers that make you uniquely strong.
Watch India’s story and find out more:
What one flare taught her about the power of self-acceptance
The surprising reason she had to stop using steroids and what worked instead
How a strep infection changed the course of her health forever
Why she tells strangers about her condition and how it breaks stigma
The raw truth about being a young mom with psoriatic arthritis
Name: India B.
Age at Diagnosis:
18 (psoriasis), 22 (psoriatic arthritis)
Diagnoses:
Psoriasis and Psoriatic Arthritis
Symptoms:
Psoriasis: Small red spots on thighs, face, and ears after catching strep throat
Psoriatic Arthritis: Foot swelling, joint pain in toes, fingers, and hips
Treatments:
Topical steroids
UVB light therapy
Supplements: Vitamin D, vitamin C, zinc, turmeric
Diet modification
Epsom salt baths
Heat therapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptoms: Painful cracked skin on the scalp, inflammation on the top of the foot, joint pain in the foot Treatments: Shampoos, creams, injections, pills, prescription medications, biologics
Symptoms: Psoriasis: small red spots on thighs, face, and ears after catching strep throat; Psoriatic Arthritis: foot swelling, joint pain in toes, fingers, and hips
I Have a Rare Cancer Diagnosis: Abbie’s Solitary Plasmacytoma of Bone Story
When Abbie was diagnosed with solitary plasmacytoma of bone at just 21, her world didn’t just pause — it shifted completely. Living in Des Moines, Iowa and studying abroad right before her diagnosis, she went from planning medical school to confronting the realities of a rare blood cancer that most people her age have never heard of. While her condition was caught relatively early, the emotional and mental weight of it all hit just as hard as the physical effects.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
It all began with rib pain that seemed minor but wouldn’t go away. Even though a lesion had been spotted years earlier during a scan, it wasn’t until the pain worsened and a biopsy confirmed the diagnosis that everything became real. And like many young people navigating healthcare, Abbie had to advocate for herself before finally finding a doctor who truly listened, which made all the difference.
Abbie underwent six weeks of daily radiation, and although treatment was quick and effective, it wasn’t without challenges. Pain became unbearable, landing her in the hospital and on a complex pain regimen. Still, she managed her treatment largely on her own, even driving herself to appointments. Her resilience is clear but so is the mental toll.
Abbie opens up about what it’s like living with constant uncertainty. With a 70% chance her cancer could progress to multiple myeloma, “scanxiety” is real and ever-present. Every six months, she returns to the Mayo Clinic, holding her breath and hoping her scans are clear.
Yet amidst this uncertainty, Abbie has found a new kind of clarity. Her solitary plasmacytoma of bone diagnosis reshaped how she views success, purpose, and even her identity. She no longer chases external expectations; instead, she’s intentional with her time, her relationships, and her choices. She doesn’t take anything or anyone for granted.
Despite feeling isolated at times due to her age and the rarity of her condition, Abbie is committed to sharing her story, hoping others with solitary plasmacytoma of bone or any rare diagnosis feel less alone. Her advice is simple but powerful: Be grateful. Be vulnerable. Be open. And know that even in moments of solitude, you’re never truly alone.
Watch Abbie’s story to find out more about:
What it’s like to be diagnosed with a rare cancer at 21 and feel like no one gets it.
How one supportive doctor changed everything for Abbie.
The emotional rollercoaster of living with “scanxiety” every six months.
Why Abbie walked away from her medical school dreams.
The unexpected ways cancer redefined her idea of happiness and success.
Name: Abigail W.
Age at Diagnosis:
21
Diagnosis:
Solitary Plasmacytoma of Bone (SPB)
Symptoms:
Lesion on rib visible on earlier scans
Persistent rib pain (localized)
Fatigue
Treatment:
Radiation therapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Michelle’s Story of Faith, Strength, and Self-Care to Overcome Stage 3 Cervical Cancer
Michelle’s story is one of resilience, faith, and self-care. Diagnosed with stage 3 cervical cancer in 2021, she faced uncertainty and fear but chose to believe in herself and trust in God. Before her diagnosis, Michelle suffered a stroke that temporarily took away her voice. As she recovered, she started experiencing heavy bleeding with blood clots and intense lower back pain. While her doctor initially thought it was pre-menopause, Michelle knew something was off. She pushed for further testing, which led to an abnormal pap smear and, ultimately, a cancer diagnosis.
Hearing she had stage 3 cervical cancer was overwhelming. Michelle recalls, “I didn’t realize how much I wanted to live until I heard I had cancer.” But from the start, her care team at Kaiser provided reassurance and a clear treatment plan. She underwent 25 rounds of external radiation, seven chemotherapy sessions, and three brachytherapy treatments. Though she expected chemo to be easy at first, the reality hit hard — nausea, exhaustion, and the mental weight of treatment became part of her daily life. Despite the physical toll, she found ways to uplift herself, marking down the days and focusing on the belief that this was temporary.
Faith played a vital role in Michelle’s healing. She was deeply moved when her internal radiation doctor prayed with her, reinforcing her trust in God’s plan. Throughout her treatment, Michelle leaned into her spirituality, listening to Christian music, reading scripture, and watching uplifting podcasts to keep her spirits high. Her experience also deepened her understanding of self-care. Having dedicated much of her life to raising her daughter after her stroke and stage 3 cervical cancer experience, Michelle realized she needed to prioritize her well-being. She started taking vitamins, eating healthier, and focusing on her health in ways she never had before.
When her doctor called to say she was cancer-free, relief washed over her. Michelle compares the experience of having cancer to experiencing grief — while the world moves on, the emotional weight lingers. But through faith and inner strength, she found hope. Today, Michelle shares her experience on social media to support others newly diagnosed, letting them know that what they’re feeling is normal. She reminds others to believe in themselves and to reach out for support. Her message is clear: “You will get through this. You will come out stronger.”
Watch Michelle’s story and find out more about her experience:
How a stroke unexpectedly led to Michelle’s cervical cancer diagnosis
The surprising moment that deepened her faith during treatment
What no one told her about cervical cancer—and why she shares her story today
The hardest part of chemotherapy (hint: it wasn’t the first session!)
How she’s using social media to empower and support newly diagnosed patients
Symptoms: Heavy periods, abnormal bleeding, large blood clots, severe cramping, severe abdominal pain, pain radiating down the left leg, loss of mobility in the left leg, loss of appetite, fatigue
Symptoms: Intermittent spotting during or after sex, unpredictable menstrual cycle, abdominal pain particularly under the rib cage Treatments: Chemotherapy (cisplatin & paclitaxel), immunotherapy (Keytruda), surgery (total abdominal hysterectomy with bilateral salpingo-oophorectomy & omentectomy) ...
Joining Forces: Alli’s Integrative Approach to Appendix Cancer (LAMN & PMP)
Alli’s story is one of resilience, self-advocacy, and the power of holistic care. Diagnosed with a rare type of appendix cancer (low-grade appendiceal mucinous neoplasm, or LAMN) that lead to a second rare cancer diagnosis — pseudomyxoma peritonei (PMP) — on Christmas Day in 2023, Alli faced a whirlwind of emotions and medical decisions, leading to personal growth. Living in Perth, Australia, but originally from the UK, she navigated this challenging time far from her extended family. Yet, through it all, she found a new purpose, deeper connections, and a fresh appreciation for life.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Looking back, Alli realizes she had symptoms for years — persistent bloating, constipation, severe abdominal pain, unexplained weight fluctuations — but they were often dismissed. As a nurse practitioner, she knew her body and pushed for answers, yet traditional scans failed to detect her low-grade appendiceal mucinous neoplasm (LAMN) with pseudomyxoma peritonei (PMP). Even after relocating to a different state, her symptoms intensified. It wasn’t until she demanded another scan in December 2023 that doctors discovered a suspicious fluid-filled mass. Days later, she found herself in emergency surgery.
Waking up from surgery, Alli was told her appendix had ruptured and cancer had spread throughout her abdominal cavity, affecting multiple organs. The news was devastating, but Alli’s medical background kicked in and she immediately started researching her options. With only five surgeons in Australia performing the complex peritonectomy surgery needed for her condition, she faced long wait times. Instead of succumbing to feelings of powerlessness, Alli took control of her health, exploring integrative treatments.
Alli traveled to Thailand where she underwent low-dose chemotherapy, hyperthermia, and high-dose vitamin infusions. This integrative treatment approach helped her reduce inflammation and tumor burden, making her stronger for the major surgery ahead. When the time came, Alli flew to Melbourne for the peritonectomy — a grueling 15-hour procedure. Waking up, she was overwhelmed with gratitude. The surgeons believed they had removed all visible cancer.
However, the road to recovery wasn’t easy. Just weeks later, Alli was hospitalized with a bowel obstruction and was told she was too high-risk for another surgery. She managed to avoid emergency intervention, but the experience was one of the most emotionally taxing of her life. Through holistic approaches and self-care, she has since managed her health while embracing a renewed sense of purpose.
Alli now dedicates herself to raising awareness about appendix cancer, self-advocacy in medical settings, and the importance of seeking second opinions. She emphasizes that no one should settle for a single diagnosis without exploring all options. Through social media, she provides hope to others facing cancer, proving that a diagnosis doesn’t define you — it’s how you approach it that matters. Every day, she wakes up grateful for life, her family, and the strength she’s built along the way.
Watch Alli’s story to find out more about:
How Alli’s medical background helped her fight for a proper diagnosis.
Why she chose a combination of alternative and traditional treatments before major surgery.
The mental and emotional impact of possibly dying young, like her mother.
The power of community and self-advocacy in navigating a rare cancer diagnosis.
Name: Alli B.
Age at Diagnosis:
45
Diagnosis:
Appendix cancer – also known as Low-Grade Appendiceal Mucinous Neoplasm (LAMN) with Pseudomyxoma Peritonei (PMP)
The Routine Check That Wasn’t: Monica’s Stage 1 Colorectal Cancer
Monica Dean, a San Diego news anchor and mom of three, thought she was just checking off a routine health to-do when she went in for her first colonoscopy at 46 and ended up with a stage 1 colorectal cancer diagnosis. She felt healthy and had neither symptoms nor an immediate family history of colorectal cancer. But thanks to a conversation she’d had with a man who wished he’d gotten screened earlier, Monica followed her gut and got the screening anyway. That decision, she says, saved her life.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
During the colonoscopy, doctors found 13 polyps and a two-centimeter mass that turned out to be stage 1 colorectal cancer. Monica describes waking up mid-procedure, still groggy but alarmed when she saw the medical team’s serious expressions. Her world shifted instantly. What was supposed to be a routine checkup had become the beginning of a life-altering experience.
Even though the diagnosis was shocking, Monica leaned heavily on her faith, family, and inner strength. Waiting for the final pathology results was agonizing. She wrestled with fear, numbness, and uncertainty, but her belief in God kept her grounded. Through it all, she stayed committed to showing up for her family. She even anchored the news 30 minutes after getting her diagnosis because doing something familiar felt oddly comforting.
Tests confirmed that her stage 1 colorectal cancer hadn’t spread. She met with multiple doctors, including the chief of colorectal surgery at UC San Diego Health, and decided on a lower anterior resection surgery. This complex surgery required her to live temporarily with an ileostomy, something she had never imagined but learned to manage with grace and strength.
Post-surgery pathology brought good news: no lymph node involvement and clean margins. She wouldn’t need chemotherapy or radiation. Monica candidly shares the physical and emotional toll of recovery, including fatigue, pain, and adjusting to life with an ostomy bag. But she also emphasizes the clarity that came from it all — how it slowed her down, helped her re-evaluate her priorities, and deepened her faith.
Now, Monica’s passionate about encouraging others to get screened, especially if you’re nearing 45 or have a family history. She wants people to know that catching stage 1 colorectal cancer early can be lifesaving and that leaning into your support system, whether it’s faith, family, or community, makes a world of difference.
Watch Monica’s story to learn more about:
Why she scheduled a colonoscopy despite feeling perfectly healthy.
The one conversation that pushed Monica to get screened, which may have saved her life.
How a surprise diagnosis gave her a deeper sense of purpose and a renewed perspective.
How community and clarity emerged in the most unexpected way.
Name: Monica Dean
Age at Diagnosis:
46
Diagnosis:
Colorectal Cancer
Staging:
Stage 1
Symptoms:
None; caught at a routine colonoscopy
Treatment:
Surgery: Low anterior resection with temporary diverting ileostomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
How Michelle and Jolene Each Live with Malignant PEComa, an Incredibly Rare Type of Cancer
Michelle and Jolene’s stories are about resilience, advocacy, and the power of awareness. Both women were initially diagnosed with other conditions with overlapping symptoms to their cancer diagnosis. Michelle had excessive bleeding that was attributed to fibroids, while Jolene attributed her symptoms to menopause.
With the COVID-19 pandemic adding to medical delays, neither of them received an immediate diagnosis. They both went through hysterectomies to treat their suspected diagnoses, leading to the shocking revelation that they each had malignant PEComa cancer (perivascular epithelioid cell tumor), a rare and incurable form of cancer.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
For both women, the diagnosis came as a gut-wrenching surprise. Jolene recalls waking up from surgery, groggy from anesthesia, only to learn that things didn’t look right. Michelle, a researcher by nature, turned to Google for answers, even though her doctors warned against it. The fear of the unknown weighed heavily on them, but they knew they had to press forward.
The reality of treatment set in quickly. There is only one FDA-approved therapy for malignant PEComa cancer, a drug that became available just in time for Jolene to start in 2022. Michelle initially had a strong response to it and she remains stable today. Still, both women live with uncertainty. Jolene, a mother, made it her mission to be present for her daughters’ milestones, focusing on each day rather than an unknown future. Michelle, on the other hand, has embraced self-advocacy, meticulously documenting her medical journey so others can learn from it.
Michelle and Jolene are determined to raise awareness of malignant PEComa cancer. Unlike breast cancer or leukemia, PEComa is virtually unknown, even among medical professionals. To note, PEComas are usually benign (noncancerous) and localized, but some are malignant (cancer), which is what both Michelle and Jolene were diagnosed with. They believe that through advocacy and exposure, more people will recognize the symptoms early and push for proper diagnoses.
Their advice is simple yet powerful: never lose hope. Every case is different, and statistics don’t define a person’s future. They emphasize trusting one’s medical team, staying informed, and, most importantly, finding a support system.
Watch the video to find out more from Michelle and Jolene about:
How a selfless act of love led to an unexpected diagnosis.
The one FDA-approved drug that stands between them and an uncertain future.
Why raising awareness for rare cancers like malignant PEComa is more important than ever.
The advice they have for everyone who’s facing a tough diagnosis.
Name: Michelle C.
Diagnosis:
Malignant PEComa cancer (perivascular epithelioid cell tumor)
Staging:
Stage 4
Symptoms:
Heavy bleeding
Asymptomatic lung masses discovered through kidney donor evaluation
Thank you to Aadi Bioscience for supporting our independent patient education content. The Patient Story retains full editorial control over all content.
Michelle and Jolene were both diagnosed with an incredibly rare type of cancer. Michelle was diagnosed in 2023, while Jolene was diagnosed two years prior. They received a diagnosis so rare that it affects less than one out of 1 million people each year: malignant PEComa (perivascular epithelioid cell tumor). According to the National Organization for Rare Disorders, this diagnosis is “most likely to occur in middle-aged females, with some studies reporting PEComas are five to seven times more likely in females than males.”
I was experiencing some bleeding… it continued to get worse to the point where I was sent to the emergency room because I was bleeding so much.
Jolene
The Red Flags for Michelle and Jolene
Michelle: Originally, I had fibroids, so I experienced excess bleeding during my menstrual cycle. At that time, I thought it wasn’t typical, so I called the doctor and they said that irregular menstrual cycles are normal sometimes.
Jolene: I was experiencing some bleeding and I thought it was possibly related to starting menopause. It was also during COVID, so I wasn’t going to the doctor a lot. I didn’t worry about it and it continued to get worse to the point where I was sent to the emergency room because I was bleeding so much. They did some scans, thought it was a fibroid, and proceeded from there.
To treat each of their other diagnoses, both Michelle and Jolene opted for hysterectomies, a surgical procedure that removes the uterus. The procedure would uncover cancer for both of them.
Hysterectomy Uncovering Their Cancer
Jolene: I had an early morning surgery and they told me how long it would possibly take. I remember coming out of the anesthesia and seeing the clock in the recovery room — it was three hours later than I’d thought. My surgeon told me that when they started the surgery, things didn’t look right, so she sent a sample off for biopsy. They didn’t know what kind of cancer it was, but they knew it was cancer. I was so out of it that I just accepted it.
Michelle: I was scared. I’m the type of person who when I don’t know what something is, I have to Google it and look it up, which my doctors don’t recommend. They told me that Google is not my friend. But I always want to learn. I love reading and doing my research. I did Google it and it was scary. My main concern was the life expectancy.
Michelle and Jolene received the news no one ever wants to hear: the cancer is back and now it’s Stage 4.
I was shocked because I wasn’t feeling short of breath or noticing anything strange. I didn’t have any symptoms.
Michelle
Finding Out They Have Stage 4 Cancer
Jolene: I can’t even describe how excruciating the pain was. Internal bleeding is one of the worst pains that you can feel. I wasn’t at the main hospital because I went to the hospital where I thought I would be able to get in faster and they performed a procedure to slow down the bleeding.
I was in shock. I was diagnosed in May. That happened in January and in February, I had another surgery. The tumor was fairly large. Recovery was difficult. It was painful and took quite a while, but the margins were clear. No lymph node involvement. At that time, the doctor told me that I was now stage 4 and it wasn’t curable.
Michelle: My brother was suffering from renal failure. He didn’t want to talk about it, but I went behind his back and got tested to see if I was a potential match. I went through the donor evaluation, which is a pretty rigorous testing process to make sure that the donor is healthy enough to donate. At the end of the evaluation, they did a chest X-ray and found multiple masses in my lungs. I was shocked because I wasn’t feeling short of breath or noticing anything strange. I didn’t have any symptoms.
Jolene: You’re always living in fear, just knowing how quickly it came back and how severely the first time. So I can give you an example. Three weeks ago, I felt a lump kind of in my upper leg, and then a week later I that was very tender. I felt another one in like my armpit area. And those areas aren’t really covered by the CT scans I get every three months.
So to say that I was a mess is putting it nicely. This past week, they scheduled a PET scan for me right away. I don’t have the final report, but the nurse practitioner called me and said it looks good.
It’s really hard not to react to any little lump [or] bump, because you know that catching it more quickly is probably to your benefit.
After Michelle and Jolene found out about the malignant PEComa, they learned what their future looked like. The FDA had only approved one therapy for malignant PEComa, approving nab-sirolimus in 2021 for patients with “locally advanced unresectable or malignant PEComa.” (FDA)
Discussing The Only Treatment Option for Malignant PEComa Cancer
Michelle: I asked, “What’s going to happen? Is my hair going to fall out?” When you think about chemotherapy, you think of the worst. Am I going to be having extreme sickness? Am I going to lose my hair? Am I going to be able to function? Those were my main concerns. I was okay until that appointment. I was apprehensive, but I was okay until we started discussing it because then it was real. I cried at that appointment.
Jolene: It was approved by the FDA a month before I started it, so I couldn’t be more thankful that they were able to develop that when they did. I started in April 2022 and told my daughters that it isn’t curable, that I’ll be on this medication, and that I will be with them for as long as I can. That’s what I continue to tell them, that I will be here as long as I can be. I honestly didn’t think I would be here because based on the clinical trials, it typically works for a year and a half to two years.
Because this is a rare and incurable cancer, the goal is to maintain quality of life and stability.
Michelle
Michelle: That was an, “Oh, s***,” moment. I thought, “One drug. Great.” My mind always goes far, so I thought, “What happens if it doesn’t work? What do I do?”
I’m grateful that there is a drug because that drug wasn’t available in 2015 when I received my initial diagnosis. If my disease was malignant from the beginning, I don’t know if they would have been able to treat it. Initially, I had an amazing response to the drug. I had rapid and significant shrinkage of tumors, and now I’m stable. Because this is a rare and incurable cancer, the goal is to maintain quality of life and stability.
Looking at the Future Living with Malignant PEComa Cancer
Michelle: In the beginning, I felt doomed. Am I going to live to see retirement? Am I going to be able to do some of the things I want to do? That was concerning. The unknown was scary. Nobody knows when their time is up, but that’s always in the back of your mind with cancer. I don’t necessarily dwell on it, but every once in a while, it’ll pop up. What do I do? Do I retire now or do I make sure that I have something for later? I’m still working part-time because I need some kind of normalcy in my life. I need structure and a purpose.
My daughters drive me to keep going… I want to be here and get my girls in as good of a place as they can be.
Jolene
Jolene: My daughters drive me to keep going and the fact that there isn’t another option. I will take what I have right now with the limitations that I have, which are the side effects. But given the alternatives, I want to be here and get my girls in as good of a place as they can be. I can’t imagine losing a parent as a teen or early 20s because my parents are still alive and doing well, and they’re a big part of my support system.
What Michelle Has Learned
Michelle: The one good thing out of this is I learned to advocate more for myself. I learned how to ask more questions and how to push a little bit more. In the beginning, I said if this was going to kill me, I want everybody to know about it. Not that I want to donate my body to science, but I want people to see my records and learn something. I take meticulous notes. It sounds morbid, but when I go, I’m going to have someone hand over my binder with all of my notes and paperwork.
Jolene’s Biggest Advice
Jolene: Never give up hope. Don’t look at other people who might have the same diagnosis and assume that you will follow the same path. I have sisters who are nurses, and they told me not to Google and to look at what has happened to other people. Your care team knows you the best and they’re focused on you. You don’t know what’s going to happen. I feel like right now at least, I’m proof of that.
When it came back in my liver, my goal was to be around for my youngest daughter’s high school graduation and my middle daughter’s college graduation, and those were in May and June 2024. I’m still hanging on. I hope and pray that I will be around for a long time to come but at the same time, facing the reality that we don’t know.
People don’t know what PEComa is… Hopefully, people will become curious and talk about it more.
Michelle
Raising Awareness for PEComa Cancer
Michelle: I want people to be aware of PEComa. I want people to know what it is. When somebody says breast cancer or leukemia, people know what it is, but people don’t know what [malignant] PEComa is.
There are a decent amount of people who I’ve run into that say they know what a sarcoma is, which is rare also, but the subtype is ultra-rare. I want people to know what it is and to become curious. If they know what it is and people talk about it, there’s more exposure. Awareness is very important to me. Hopefully, people will become curious and talk about it more.
Special thanks again to Aadi Bioscience for supporting our independent patient education content. The Patient Story retains full editorial control over all content.
Thank you for sharing your stories, Michelle and Jolene!
Symptom: Mild back pain on her left side that escalated in severity Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib ...
Symptoms: Swelling in the face, stomach, hands, and feet, high blood pressure, acne on back and chest, itchy and tingling tongue, burning in the eyes with discharge, hair loss on the head, hair growth on upper lip and chin, bloating and stomach pain, food aversions, easy bruising, slow healing, missed periods
Treatments: Surgery to remove the tumor, chemotherapy (EDP-mitotane), radiation (SBRT), immunotherapy (Keytruda/pembrolizumab), targeted therapy (Lenvima/lenvatinib) ...
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Navigating Life After Cancer at 18: Lauren’s Primary Mediastinal Large B-Cell Lymphoma Story
Lauren reflects on her experience of being diagnosed with primary mediastinal large B-cell lymphoma, a type of non-Hodgkin’s lymphoma, at just 18 years old. Growing up, she had a busy and active life, balancing school, sports, and church activities. However, in the summer of 2019, after graduating high school, she started noticing some unusual symptoms. She developed a persistent dry cough that wouldn’t go away despite various treatments. Over time, she became extremely fatigued, had trouble breathing, and noticed swelling and discoloration in her left arm. These signs eventually led to her discovering a lump under her arm, prompting her to visit her pediatrician.
Despite several visits and tests, the doctors initially brushed off some of Lauren’s concerns. Her pediatrician detected a heart murmur and then referred her to a cardiologist. After more tests, the cardiologist’s findings led Lauren to the emergency room, where a CT scan revealed a large tumor in her chest. An oncologist quickly confirmed the worst: lymphoma. This shocking diagnosis changed everything, and doctors rushed her to a larger hospital for further testing, where she learned the tumor was pressing on her lungs and heart.
Doctors diagnosed Lauren with a rare subtype of non-Hodgkin’s lymphoma called primary mediastinal large B-cell lymphoma. Her treatment plan included six rounds of chemotherapy over six months. She experienced significant side effects, including fatigue, hair loss, mouth sores, and flu-like symptoms after each round. But through it all, she found solace in her faith and began documenting her experience through social media. Sharing her story on YouTube allowed her to connect with others facing similar battles, turning her experience into a source of strength for herself and others.
After completing chemotherapy, doctors declared Lauren cancer-free. She celebrated this milestone but acknowledged the challenges that came afterward, such as health anxiety and long-term side effects, including fertility concerns. Nonetheless, she has embraced her life post-cancer, celebrating the lessons learned and the life still to be lived. Lauren’s story is one of resilience and empowerment. She has used her experience to help others, share her journey, and find her true passion in marketing and public relations.
Watch her story to hear from Lauren on:
How she turned her cancer diagnosis into a platform for hope and connection.
How she faced the unexpected with faith and strength.
How she navigated the toughest challenges of chemotherapy, including hair loss and the emotional toll.
What she wishes she had known during treatment and how she found purpose in the hardest moments.
Name: Lauren Mae D.
Age at Diagnosis:
18
Diagnosis:
Primary Mediastinal Large B-Cell Lymphoma (PMBCL)
Symptoms:
Dry cough
Extreme fatigue
Trouble breathing
Swollen and discolored left arm
Lump under the arm
Treatment:
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
From Fatigue & Flares to Self-Advocacy: Chaylee’s Psoriatic Arthritis Experience
Editor’s Note: At The Patient Story, we’ve built a platform where real stories empower people facing cancer—but that same storytelling power can uplift those living with other serious health conditions, too.
We’re expanding our reach to include chronic autoimmune diseases like psoriatic arthritis—a condition that’s often misunderstood and underdiagnosed, especially in young adults. In this story, Chaylee shares her experience navigating overwhelming fatigue, joint pain, and years of frustration before finally getting the right diagnosis. From treatment setbacks to mental health challenges and moments of advocacy, her story offers raw honesty, encouragement, and a reminder that no one should face chronic illness alone.
When Chaylee started feeling wiped out all the time and noticed her joints swelling, she knew something was wrong, but she didn’t expect it to be psoriatic arthritis. At the time, she had just graduated high school and was starting college. Instead of soaking up her independence, she found herself stuck on the couch, too fatigued to move and dealing with painful, swollen joints. It wasn’t just uncomfortable; it was life-disrupting.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Her first doctor brushed her off with a fibromyalgia diagnosis and a prescription that left her feeling foggy and unable to function. She dropped out within a week of starting college, losing her full-ride scholarship. That low point was painful, but it pushed her to take control. Chaylee moved six hours away to Boise for better care, which paid off. A new rheumatologist listened to her, took her symptoms seriously, and finally diagnosed her with psoriatic arthritis in January 2023.
Looking back, the signs were all there, especially the scalp psoriasis Chaylee had dealt with since she was a pre-teen. But no one ever told her that psoriasis and psoriatic arthritis often go hand in hand. That lack of awareness was frustrating, especially since early intervention makes such a big difference.
While navigating chronic illness as a young adult isn’t easy, Chaylee found ways to adapt. Community played a huge role. Connecting with others online who understood what she was going through made her feel less alone. She also tapped into creativity, making spoon jewelry to connect with fellow patients and joining the Young Patients Autoimmune Research and Empowerment Alliance (YPAREA) to help make research more accessible for people her age.
Chaylee’s treatment took time to figure out. Celecoxib didn’t work and methotrexate helped but came with heavy side effects. Eventually, she started adalimumab injections, which gave her more consistent relief from psoriatic arthritis symptoms. While flare-ups still happen — especially in cold weather or under stress — she’s found ways to manage them.
Some of Chaylee’s biggest lessons? Self-advocacy is everything. Learning to speak up, ask questions, and request better care changed her life. She’s also passionate about mental health — reminding others that your worth isn’t defined by productivity and that it’s okay to rest. Psoriatic arthritis may have changed her plans, but it’s also helped her discover new passions, connect with others, and live more intentionally.
Watch Chaylee’s story to learn more:
Discover how Chaylee rebuilt her life after her chronic illness disrupted her future plans.
See how a correct diagnosis turned confusion into clarity and relief.
Learn how finding creative outlets helped transform isolation into empowerment.
Explore how Chaylee is breaking stereotypes about psoriatic arthritis and young adults.
Get inspired by how she balances work, advocacy, and well-being despite chronic pain.
Name: Chaylee M.
Age at Diagnosis:
19
Diagnosis:
Psoriatic Arthritis
Symptoms:
Severe fatigue
Swollen fingers and face
Joint weakness
Flaky skin
Rashes
Long-term scalp psoriasis
Treatments:
Celecoxib
Methotrexate
Adalimumab injections
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptoms: Painful cracked skin on the scalp, inflammation on the top of the foot, joint pain in the foot Treatments: Shampoos, creams, injections, pills, prescription medications, biologics
Symptoms: Psoriasis: small red spots on thighs, face, and ears after catching strep throat; Psoriatic Arthritis: foot swelling, joint pain in toes, fingers, and hips
From Itchy, Painful Skin to Empowerment: How Victoria Navigates Life with Plaque Psoriasis
Editor’s note: At The Patient Story, we’ve built a platform where real stories empower people facing cancer. But the need for that same kind of understanding and connection extends far beyond cancer to other serious health conditions.
We’re expanding our reach to include more of these lived experiences—because they, too, can be life-changing. Psoriasis is one such condition: a chronic autoimmune disease that affects millions and remains widely misunderstood.
In this story, Victoria shares what it’s like to live with plaque psoriasis—from painful flares and treatment trials to stigma, advocacy, and unexpected sources of hope. If you’re looking for authentic insights into psoriasis treatments, emotional resilience, and the power of community, her voice will resonate.
Victoria, known online as @flyforaginger, is a content creator and social media manager based in San Diego, California. She was diagnosed with plaque psoriasis in 2010 and describes the experience as frustrating yet hopeful. Since psoriasis is an autoimmune disease, finding the right treatment isn’t a one-size-fits-all approach — it’s about trial and error, and adapting to changes over time. Though the process can be exhausting, she remains grateful for the many treatment options available.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Victoria’s first symptoms appeared in middle school as painful, cracked skin on the back of her scalp. By the time she reached high school and college, inflammation on her foot became another concern. What started as a mysterious bump led to her plaque psoriasis diagnosis and, eventually, psoriatic arthritis. Unfortunately, not every doctor she saw took her seriously. A rheumatologist even dismissed her arthritis symptoms entirely, highlighting the all-too-common struggle of being told “nothing is wrong” when, in reality, something very much is.
Determined to find answers, Victoria continued seeking care. While some doctors were dismissive, others went above and beyond to help her access treatment. One dermatologist was so frustrated by her lack of progress that he offered expensive injections at a fraction of the cost. But Victoria knew that couldn’t be her only option—so she sought another opinion and discovered better treatments. This experience reinforced a vital lesson: doctors are experts, but patients know their bodies best. Advocating for yourself is crucial.
Plaque psoriasis impacts more than just Victoria’s skin; it takes a toll on her mental health, confidence, and daily life. Flares can be painful and emotionally draining, especially since stress is a major trigger. And because she’s a content creator, showing her face online — sometimes during a flare — can feel vulnerable. However, sharing her reality has created a supportive community where people openly discuss their struggles, celebrate their wins, and exchange tips. Turning her experiences into moments of education and advocacy has been a game-changer.
As a plus-size woman, Victoria faces stigma not only about her body but also about her skin condition. Some people blame her plaque psoriasis on her weight, pushing harmful and inaccurate narratives. Rather than engaging with negativity, she focuses on spreading accurate information and fostering a compassionate community. She reminds others that psoriasis isn’t anyone’s fault—what works for one person may not work for another. No matter what, everyone deserves respect and understanding.
Over the years, Victoria has tried countless treatments, including over-the-counter creams, prescription medications, steroid injections, and biologics. For eight years, she participated in clinical trials, which provided access to cutting-edge treatments at no cost. While some worked and others didn’t, clinical trials gave her better care than she had ever received elsewhere. She encourages others to research trials as an option, emphasizing their safety and the attentive medical oversight involved.
Victoria urges people to curate their social media feeds with uplifting, empowering voices. Following people who embrace their conditions and exude confidence can make a world of difference. She also emphasizes the importance of mental health care—whether that’s therapy, deep breathing, or simply unwinding with a favorite TV show. At the end of the day, she wants people to know they are not alone. Community, advocacy, and self-love can turn even the hardest days into something meaningful.
Watch Victoria’s story to find out more:
The doctor said, “There’s nothing wrong with you”—but Victoria knew better.
How an artistic photo shoot of her psoriasis flare changed everything.
From stigma to self-love: Victoria’s raw take on living with psoriasis.
What she learned from eight years of clinical trials (and why she recommends them).
The unexpected way social media became her greatest source of support.
Name: Victoria V.
Age at Diagnosis:
19
Diagnosis:
Plaque Psoriasis
Symptoms:
Painful cracked skin on the scalp
Inflammation on the top of the foot
Joint pain in the foot
Treatments:
Shampoos
Creams
Injections
Pills
Prescription medications
Biologics
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Tell us by signing up for updates and consider sharing your own experience. The more voices we bring together, the stronger and more supportive this community becomes. Let’s build a library of real, authentic stories—told by you, for others who need to hear them.
Dr. Blue on Improving Myeloma Care for Black Patients
Interviewed by: Stephanie Chuang Edited by: Katrina Villareal and Chris Sanchez
Brandon Blue knew at a young age that he wanted to help people. Decades later, he’s done that and so much more, changing and saving the lives of people who’ve been diagnosed with cancer. Now known as Dr. Brandon Blue, he’s become a well-known hematologist-oncologist at Moffitt Cancer Center, a comprehensive cancer research center recognized by the National Cancer Institute.
In this story, learn key tips on how people can make a difference for themselves and their health, and regarding what can help save lives, specifically for his specialty: multiple myeloma, an illness that disproportionately impacts people in his own communities, including Black/African-Americans.
In fact, despite how busy Dr. Blue is as someone who does research and helps countless patients, he decided to join a group of patients, advocates, and other myeloma stakeholders for more than two years to collaborate on how to improve the care of underserved groups like Black/African-American multiple myeloma patients and their families. They put together a report that was selected for presentation at the largest gathering of top doctors and researchers in blood cancer called the American Society of Hematology (ASH) annual meeting, a presentation led by a patient advocate named Oya Gilbert.
Watch this second episode of our series to hear about their top solutions on how to serve as many people as possible dealing with the hardships of a cancer diagnosis.
Thank you to Pfizer for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Whatever I do in life, it’s going to involve helping people.
My Path to Medicine
When I was a kid, I was always good at math and science. My mom always told me that if you get good grades, good things will happen. When I was a senior in high school, I wanted a senior ring, but we didn’t have the money for it. So my mom said, “Get a job, and then you can pay for it.” Right across the street from my house was a nursing home that had this big “Help Wanted” sign.
I went over there and asked if I could do any work for them. And they hired me right then and there. I realized I didn’t know what it meant to work in a nursing home. But it was fantastic for me because I got a chance to see people who needed a lot of help, and I realized, hey, I can help them. I worked in the kitchen, and my job was to deliver the food to the patients, so I didn’t help them medically, but I do think that I helped them in a way because I was very inquisitive.
So I’d always get in trouble for leaving the kitchen and going to talk to people. And I felt like I was drawn to people, and it was my chance to be able to talk to them. And that was my first glimpse of my mission. Whatever I do in life, it’s going to involve helping people.
In the nursing home, the holidays were a big deal. Unfortunately, families couldn’t come to visit many of the patients. I remember a lady with a terminal illness or condition. She didn’t have too long left to live, and her family wasn’t there during the holidays. So I knew that time spent with her meant the world to her because, sadly, that was probably her last Christmas. And so I decided I was going to sit with her for a little while. It was fantastic for her to spend time with someone again, especially during the holidays. That was something that I’ll never forget.
So, as a teenager, I decided that I wanted to help people, and I knew I was good at math and science. I thought, “Well, how can I put these together?” So, after high school, people started asking, “What are you going to do next?” And I thought, “Oh my gosh, they want me to have my life figured out at such an early age.” And so I responded, “I think a way that I can use my math and science skills to help people is to become a doctor.”
I knew nothing about being a doctor. But I had seen the doctors who were helping the people at the nursing home, and so that was how I first thought that I could do it, too. I didn’t know what it took, but at least that was my idea of what I wanted to do, even though I didn’t know what that path looked like.
I didn’t have any family members who were doctors. I didn’t have any guidance.
I saw my first Black/African-American doctor when I was in medical school. He was one of my teachers. For me, that was my first I-can-actually-do-this moment. It went from an abstract thought that I didn’t know how to actualize, to — this guy came from where I came from, and he talks like me, looks like me, and he’s making it. So maybe I can make it too.
I want to inspire people to say, “Hey, you go to school, you get good grades, and you can become a doctor.”
The Power of Realizing My Dreams
As much as I’m the first in my family to be a doctor, I want to make sure that I’m not the last. We have to make sure that we’re always giving back. And so a big thing for me is to make sure that other Dr. Brandon Blues are following behind me. If, when I was young, someone had been able to guide me and say, “This is the road, this is the path, this is how you do it,” then I might have avoided some of the pitfalls of youth. So that’s one of my main goals: to give back and help people.
I played a lot of basketball and football. For a lot of folks in my community, that was their way of making money. That’s what everyone thought. You play these sports, you excel at them, and that’s how you’re going to be successful in life. I want to inspire people to say, “Hey, you go to school, you get good grades, and you can become a doctor.” And that’s one of the aspirations that I want little kids to develop, instead of just football or basketball aspirations.
I connect with people in three places. The first is the community center. Kids go there after school to play basketball and do homework. I tell them, “I know you’re only in middle or high school, but let me tell you what the next ten years could look like if you take your math and science classes seriously.”
The second place is the barbershop. In the Black/African-American community, we trust our barbers. Plenty of conversations that happen there don’t happen anywhere else. I want to make sure that health care is discussed there, too. The third place is the church. That’s a cornerstone for minority communities. I want to make sure that, as much as people trust their faith leaders, they can also trust their doctors. I want to let people know that we only want to help.
People say, “I want a doctor who looks like me.” I have patients who drive from all over the country to see me. Unfortunately, there are not enough minority doctors. I do hope that that changes ten or 20 years from now. I know that the connections that I’ve made with my patients are priceless. And so I just want to make sure that I do the best thing for them and that people know that you can come from my community and still be successful.
The rate of having multiple myeloma is about twice as common in the Black/African-American community.
Multiple myeloma is a cancer that unfortunately needs heavy treatment, like chemotherapy, to help people get better. However, it’s not a curable disease, so it’s more of a lifelong illness.
Typically in medical textbooks, the average age of diagnosis for multiple myeloma is 69. For Hispanics, it’s 62. For Black/African-Americans, it’s 64. Why does that matter? Because when you go to the doctor complaining about certain symptoms, they’re looking for someone who is nearly 70 and you’re in your early 60s, they’ll say, “Oh, you couldn’t have that.” Unfortunately for the minority community, multiple myeloma is one of those things that we get at a younger age. Also, the rate of having multiple myeloma is about twice as common in the Black/African-American community.
Common Symptoms of Multiple Myeloma
Multiple myeloma is a blood and bone marrow disorder. Unfortunately, it’s not something that you can touch. With other cancers, there might be a lump or something that you can see, like blood in the stool. But because this deals with the blood and bone marrow, it happens on the inside.
The main symptoms that people will feel would be sudden things like back pain because as that marrow fills up with cancer, bones sometimes fracture and break. Another thing that can happen is it can overload the kidneys, so the kidneys shut down or there may be changes in the urine. But a lot of times, that happens when the cancer is very advanced.
We have all the greatest minds from around the world sitting down together and trying to figure out how to cure cancer and make things better for people.
Screening for Multiple Myeloma
Early detection saves your life down the road. If we can detect multiple myeloma before the symptoms kick in, then we prevent lifelong worry and hurt. How can people do that? How can they screen for multiple myeloma?
There is an important research study that I would love everyone to participate in. The PROMISE study is meant for early detection of multiple myeloma and its precursor called MGUS (monoclonal gammopathy of undetermined significance). If you are 30 years old, live in the United States, and are Black/African-American, or have a family member with either multiple myeloma or MGUS, then you can get tested for free.
The big thing about cancer care and health care in general is that we want to be doing something better next year, or in ten years, than how we’re doing now. The only way that that happens is through research — knowing what everybody else around the world is doing and putting our minds together and saying, if that’s working, let’s take that forward.
Turning Conversation Into Action: A Collaborative Approach to Health Equity Solutions
That’s what I would say is happening here. We have all the greatest minds from around the world sitting down together and trying to figure out how to cure cancer and make things better for people. And that’s something I’m happy to be involved in. They might say, for example, African Americans have a higher rate of getting cancer (myeloma) or they might get diagnosed at an earlier age (64 versus 69). This is exactly why this research is a little bit different from anything else because we talked about the problems and we also talked about actionable steps to make things better for people starting on day one.
There were so many different people at the table, each person with their role in making things better. We can’t put this all on just the doctors or just the patients and say, well, if the doctors or the patients did this, then things would be better. It took a whole village. I think that’s the real key to the solution. I think that everyone was trying to do things their own way — the different groups each had a plan, but they weren’t all talking. So this is how we put everybody together to work together and make it better. It’s an awesome collaboration.
Years ago, cancer was a death sentence. Thanks to all the innovations, that is no longer true.
My Recommendations for Patients and Care Partners
If I had to choose one actionable step, it would be for people to get second opinions. Patients didn’t know that once they get diagnosed with cancer, they can come to an expert like myself and see if what their doctor is doing is the right thing. That’s important because there can be so many quick advancements in medicine. If your doctor is still doing things from last year or from two years ago, you might not be getting the best care. So it would be a game changer if everyone got a second opinion.
One of the important things for me is not letting cancer define people’s lives. Yes, you are a person with cancer, but you’re much more than that. I have a patient who wanted to make sure that she saw her daughter graduate from high school. One of the biggest advances that we’ve had for the cancer of multiple myeloma is called CAR T-cell therapy. Not only was that lady able to see her daughter finish high school, but she’s also now about to see her daughter graduate from college. She might not have been able to do so without some of these advancements that we’re talking about at these conferences.
Years ago, cancer was a death sentence. Thanks to all the innovations, that is no longer true. As a doctor, I try to make sure that these innovations are available to my patients and that I’m doing the right thing.
I remember a patient with severe cancer who wasn’t highly educated and didn’t understand how severe his cancer was because it wasn’t something he could touch, but he just knew that he felt bad. We tried so many different types of treatment, but unfortunately, his cancer was just too advanced. To this day, that’s something that just eats at me, if we had gotten him earlier and treated him earlier, maybe he would still be here today.
My father had a blood disorder known as diffuse large B cell lymphoma, which is a cancer that affects the lymph nodes. I’m happy to say that after two years, he’s in complete remission. He has a special IV called a port, and he gets to take his port out. Of course, he’s very happy about that. I’m happy to be involved in it because I am a cancer doctor who specializes in blood cancer. I can be a part of his journey, not only from a doctor’s side but as a son. I can educate people and say, “I know what it’s like to be a caregiver. I know what it’s like to have a family member with this cancer, and I never wish that upon anyone.” But if you do have it, just know that I’ve been able to walk a mile in your shoes.
Special thanks again to Pfizer for supporting our patient education program. The Patient Story retains full editorial control over all content
Oya Gilbert had always been full of energy. A father, a hip-hop lover, and a man who rarely got sick. But in 2015, his body started sending him signals he couldn’t ignore. But for two years, doctors dismissed his symptoms as anxiety. Watch Oya’s story from misdiagnosis to myeloma advocacy.
Symptom: None; found through blood tests Treatments: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T-cell therapy, selinexor-carfilzomib
