THE ORIGINS OF THE SOCIETY

On St. Patrick’s Day 2023, everything changed. This time was fundamentally different from major life changes and key bookends of my past existence: moves between US states or foreign nations, graduations, starting jobs, quitting jobs, promotions, professional awards, a wedding, a divorce, buying my first house. On St. Patty’s in 2023 I got a devastating medical diagnosis you don’t want to hear at age 43, or at any age for that matter. My long dance with an ultra-rare form of cancer was suddenly underway, ready or not. And I was not close to ready.

It is hard to fathom how little we know even in modern times about human anatomy and the human mind, or the many thousands of diseases that can attack one or both of them. Some deadly maladies currently have no identifiable cause that we know of, like Sézary Syndrome. But when it happens to you, you suddenly desire to absorb all the information you possibly can. If looking more closely at our bodies we’ll find that each one contains an entire universe of battlegrounds constantly churning out epic new episodes of Star Wars every day at microscopic scale. But we cannot see or begin to fathom everything that plays out at the cellular level where our fate can be determined. Unfortunately the “good guys” do not always win in this version of the universe. Given long enough, we will all succumb to the reaper sooner or later. But we have the power to make it later.

Sézary Syndrome is classified as a rare subset of Cutaneous T-Cell Lymphomas (CTCLs), named after a French Dermatologist and Syphilogist (another new word to me) named Albert Sezary in 1938. The syndrome attacks the body on three system-wide levels. Skin, blood, and lymph node networks are flooded over time with mutated cells that revolt against the body, damaging organs and systems.

Sézary patients are exceedingly special, with new confirmed cases probably numbering in the low thousands globally per year though we don’t have the most accurate data (yet). Sézary Syndrome is poorly understood, difficult to classify and challenging to diagnose. For context my father is a retired Hematologist/Oncologist with over 50 years of clinical, teaching, textbook authoring, and research experience who focused on cancer and palliative care in many countries around the world; yet he never once encountered a single confirmed Sezary Syndrome patient over that entire span of time. The condition afflicts a tiny fraction of humanity.

I suffered undiagnosed for at least several years before 2023, probably starting in 2019 when a strange red patch appeared on the back of my right hand. A skin biopsy in January 2020 was inconclusive, and the condition worsened and spread to most of my body. By far the worst symptom over the years was persistent and unbearable itching and irritation of my skin, which would turn bright red and break out in various ways including lesions. The itching in particular resulted in countless sleepless nights despite attempting many remedies along the way under the supervision of dermatologists. It is often the most challenging symptom.

It was a slow form of relentless torture to my body. It was misdiagnosed and treated for years as eczema, an unrelated autoimmune disease of the skin I may or may not have also suffered from on and off since childhood. Maybe it was never eczema. Since my transplant the eczema disappeared, which is might suspicious. The appearance and symptoms are almost indistinguishable between Sézary Syndrome and other chronic skin conditions like eczema, psoriasis, or allergic reactions.

Thus accurate diagnosis remained elusive until I presented to the doctors with multiple swollen, painful lymph nodes in my neck, armpits, groin, and thighs in addition to the skin lesions and erythroderma covering most of my body. A battery of specific advanced tests by knowledgeable medical professionals were required, including blood draws, lymph node biopsies, and skin biopsies. Luckily for me the cancer was caught in time, before it spread to critical other organs and became more immediately life threatening.

No need to pretend these unwelcome developments didn’t thoroughly faze me. I aim to be stoic but I’m definitely not at the level I aspire to be. The diagnosis was a harsh shock. I blasted through a rollercoaster of emotions and thoughts since. I was in denial for months, as if it was a bad nightmare I’d wake from. An endless stream of tests, symptoms, aggressive treatments, brutal side effects, and mental mindset issues were dealt with in the following months and years. It took me about 7 months after diagnosis to fully accept and embrace my new reality.

It all finally culminated in an allogeneic (from a donor) bone marrow stem cell transplant in November 2024 at Northwestern University thanks to an anonymous 25 year old female bone marrow donor in Boston. She is now a part of me at a deep level, and this simple unselfish act by a stranger inspired me. I am still in recovery from that major medical procedure in the latter part of 2025, and it hasn’t been easy, but the transplant got me into remission. I feel incredibly fortunate and blessed to be here. In fact transplant “Day Zero” of November 15th was the best day of my entire life.

A PROFOUND VISION, A NEW PURPOSE

On the night of January 9, 2025 I unexpectedly experienced a profound revelation and a new calling from the universe as my body recovered slowly and painfully.

Despite being diagnosed with an ultra-rare disease, one that’s a killer, I have had a great fighting chance thanks to extraordinary medical teams in Madison and Chicago, my father’s expert advice as a retired Hematologist/Oncologist, health insurance, prescription insurance, disability insurance, FMLA leave, substantial family, friend, and colleague support, and personal financial security. I’ve paid about $27,000 in out of pocket costs so far and counting; my beloved parents even more as part of my team.

I have been lucky to get this far thanks to those critical resources many Sezary patients may not have access to. However, for the rest of our lives I and all Sézary Syndrome patients are never completely “out of the woods” according to the status quo; we work toward remission and hope to stay in that state as long as possible with vigilance. The Hematology community has not established that any of the treatments courses I’ve completed are a “forever cure” for Sézary Syndrome.

We not only can, but must do something about this, together, beyond just hoping for the best.

Too many others around the world suffering from ultra-rare serious diseases like Sezary Syndrome do not have all the good fortune I have had along my difficult journey. This forced me to face down harsh truths much bigger than myself.

The Sezary Syndrome Society board volunteers time and expertise with the relentless goal- even if it takes a lifetime- to eradicate Sezary Syndrome from society and help as many patients and families as possible along the way. So few cases occur globally that of course it’s possible, though I’m no medical expert by any means and the challenges are formidable.

It is up to us as a coalition. We are the organization dedicated exclusively to Sezary Syndrome at this time, although there is great work being done in the wider lymphoma space, including by established nonprofits we are partnering with like NMDP and Cutaneous Lymphoma Foundation. Perhaps we may not live to see all cancer cured in our lifetimes- but what if we can attack this one little slice of cancer that has affected this one patient so deeply, help many other patients all along the way, and build a growing supportive community for us to work on this goal for decades to come? Those who know me and are signing up to volunteer for this little project are very much aware, we’ll prioritize having fun every step of the way!

Thank you for being here.

r/Sezary Syndrome

mahanth@gmail.com

sezary.org