My personal health journey
Sirish Pulusani
Warning: This page contains graphic images of a medical nature. If you get queasy easily, do not scroll past the image.
Background​
Even though very few people except for my closest family knew, for 30 years the most significant thing about me was that I suffered from severe atopic dermatitis. It simply affected every aspect of my existence, from my professional life to personal relationships.
The constant itch led to sleepless nights and tiring days. A cycle of itchiness, blood, pain, infections, anxiety, stress, embarrassment, shame, and disgust was a normal week.
Multiple decades were spent trying everything from ineffective Chinese herbal medicines to phototherapy to powerful systemic immunosuppressants that caused horrible side effects.
At one point, I had exhausted all avenues of treatment after seeing physicians around the country and world—from top dermatologists and allergy specialists at Massachusetts General Hospital/Harvard Medical School to prominent physicians in India.
Then, in 2015, I was lucky enough to be accepted into a clinical trial of a promising new drug called Dupixent. I documented my journey.
“The disease is characterized by an itching, oozing rash that can cover almost all of the skin. The constant itch, to say nothing of the disfigurement, can be so unbearable that many patients consider suicide. There has never been a safe and effective treatment.”
- New York Times article on Atopic Dermatitis and successful Dupixent treatment.
My elbow area had open, weeping lesions for years on end. This picture was actually taken when it had healed a little bit due to steroid ointment, so it wasn't as severe as it usually was.
Anytime I had something to do, leaving the house meant wrapping up all my wounds with gauze and tape after putting heavy ointment on them after a shower. While this took up a nontrivial amount of time, the main problem came when it was time to remove the dressings. Many times the gauze would stick to the wounds, peeling off any new skin. It became a miserable process every night.
The initial loading dose that would change my life.
In June of 2015, I started an 18 week clinical trial for Dupixent, which was then known by its generic name dupilumab. There was a 50% chance I would get the placebo and nothing would happen.
A few weeks later I was excitedly telling a relative who was a physician that I was receiving the drug and not the placebo, and he was wondering how I knew that was the case. I had been so good at hiding my illness that no one really knew the extreme nature of it. I found the only way I could describe the impact of the drug was through pictures.
“Atopic dermatitis experts said they have longed for a safe and highly effective treatment. In desperation, some prescribed other drugs off-label, like powerful immuno-suppressants or high doses of steroids, which are far from ideal because even if they helped, their side effects can be severe — kidney failure with immuno-suppressants, bone loss and even psychotic breaks with high-dose steroids.
"Patients are miserable," Dr. Boguniewicz said. “Our patients and families haven’t slept through the night, not for days or weeks, but for months or years.” - New York Times
My skin started healing the first week. The itching was gone within two weeks. By the third week, most of my wounds had scabbed over and there were only a few rough spots left.
By the one month mark, there were no more lesions, only huge white scars where they had been.
I had never experienced such clearance before. As my skin healed, my life changed dramatically. Things that seemed impossible to do before were much more manageable. The ability to sleep through the night without constantly waking up itchy and bloody altered my energy levels, mood, mental clarity, and stress levels drastically.
I finally felt I could live a normal life. I reflected back to a couple years prior when I had gotten back from two years of medical school in India, ready to do my board exams and start medical rotations in the US. My skin had flared up so badly during that time that I was bedridden, with lesions from scalp to toe, and the simplest things, like taking a shower, took incredible amounts of will to do.
I had stopped talking to friends because I didn't want anyone to see me in that condition, and I had isolated myself in my parents' home.
I remember laying in bed, feeling a sense of despair I had never experienced before, and the future seemed tragically gloomy. I had recently turned 30 and I could barely move. My health was a disaster. It was difficult to see a path forward.
It ended up being my curiosity that eventually gave me a sense of hope. I was an inexhaustible reader of anything science, health, and technology related, and being in the healthcare field, I knew that science would eventually bring about a solution to my problem.
After college, I had worked for a few years at a prominent endocrinology lab that was doing groundbreaking work at Massachusetts General Hospital, the largest research hospital in the world and Harvard Medical School's primary teaching hospital.
There I saw scientists, physicians, students, and technicians working tirelessly in labs to understand human biology on a level that would let them answer some of the hardest medical questions and eventually identify and treat illnesses that in a previous time would have been impossible to deal with.
Technological change was happening at an exponential rate, and the healthcare field would soon be transformed.
As I laid in bed, barely able to move due to the weeping, bloody lesions all over me, I was thinking that eventually, maybe in my 40's or 50's, something would finally be developed that would be able to treat this lifelong illness that had been so crippling to my mind and body. That one day I would finally be able to experience all this world had to offer, and until then, I just had to take it a day at a time and address the issues that I could control.
Little did I know that this fantasy medication in my mind was already a reality in the labs of a pharmaceutical company called Regeneron. And that I didn't have to wait decades for my life to change, rather within two years I would be effectively healed of the illness that had controlled my life for as long as I could remember.
The severe atopic dermatitis that I and hundreds of thousands of people around the world experience is not just a skin disease. It is an overwhelming chronic illness that affects every part of one's livelihood. Quality of life can be decimated and it is easy to become hopeless.
I was fortunate enough to be in the right country, at the right time, with the right circumstances and support to be able to get access to a miraculous, life-changing medication.
Most people are not as lucky as me. And for them, all I can do is raise awareness, and offer some semblance of hope that any situation can be remedied given enough time.
Game-changing therapies for almost every illness are being developed right now, and they will eventually become affordable and accessible to everyone who needs them. There has never been a better time in history to be alive, and I am certain that it only gets better from here.
I have the luxury of making that statement because my specific illness was treated, but the fact is that everything from Crohn's disease to quadriplegia to major depressive disorder has a solution and it is just a matter of putting resources to good use. Some of those interventions will be advanced therapies, for others lifestyle and environmental change offer the key.
It is important to realize that never before has there been more intellectual, financial, and technological resources going into solving the hardest problems we face in healthcare.
These days I don't need to cover up my skin anymore.
“It’s wonderful,” Dr. Jon M. Hanifin said. “We walk in the room and patients are smiling. These patients are the worst of the worst. Their life was destroyed.” - New York Times
It is surprising what is possible when human ingenuity is put to good use. I can only hope that everyone suffering from illness finds their inner resilience and realizes you can make it through any situation with the right tools and support.
This world can be a magical place when you are mentally and physically healthy. Hang in there, change is coming much sooner than you think.
