Fifty Years Ago I Would Be Dead

(or why you haven’t been seeing any running at sunrise photos) 

I am 51 years old, and recently discovered that I suffer from an auto-immune disease (called Pemphigus Vulgaris). Once I was finally diagnosed properly (a few weeks ago), I of course started reading, and was shocked to learn that:

“Before the advent of systemic corticosteroids, the prognosis of pemphigus was almost fatal within the 2 years following initial presentation.The rapid tapering of corticosteroids after achieving control of the disease, as well as the introduction of novel immunosuppressants with less long-term adverse events, have decreased both morbidity and mortality of pemphigus patients in the past few decades. With proper treatment, the 1-year mortality rate of PV has been drastically reduced, but still stands at approximately 5%, with most deaths occurring due to secondary effects of immunosuppressive agents rather than as a result of the disease itself or disease sequelae.”

So in the middle of a global pandemic I discovered I am actually in need of urgent treatment for a disease that was almost certain death in the decade before I was born (systemic corticosteroids were only refined in the 60s, made cheaper in the 70s and 80s). How’s that for a wake-up call?

As my mother said when I told her of my diagnosis, “we always look at you as the indestructible one.” And that is how I looked at myself. Until now I have been blessed on a personal physical level. I have never been hospitalized for anything (well, when I was ten years old fell down a hill and was taken to hospital, but that was more an adventure than a trauma...and went home the same day). 

I have lived with mortality directly as my spouse Haviva and two of our children have a form of muscular dystrophy (called FSHD), which over time can reach severe physical limitations -- but thankfully not a short term death sentence. Seeing my father through his struggles with physical limitations, and finally his passing at the age of 80, was a direct confrontation with mortality, but that was something I put on my father and not myself. 

I chose to hope/believe that I was immortal -- and at 51 years old was quite proud of the fact I can run/bike faster and longer than I did when I was 18 (and I was ok at 18…). I did not at all “feel my age,” outside of the fact that my hair did turn grey! 

But back in November 2019, well before Corona was on our horizon. I noticed a few weird pimples on my scalp and then later on my chest. Thought it was nothing. When it started to get worse, I went to a dermatologist (at the urging of Haviva, I rarely will go to a doctor on my own...usually hope whatever it is will just go away….which until now it did…). 

Over the months to come I bounced around to a few dermatologists, lots of different thoughts and creams, until finally a caring dermatologist said what I have is not typical (and without getting into gory details, had gotten much worse), and I really should go to the Skin Clinic at Rambam Medical Center in Haifa, a leading center for research and treatment (thankfully a short drive from Hannaton). 

All this time, looking at me, you didn’t “see” anything wrong. Why? I never took my shirt off, and I am blessed with thick hair. So while there was a battle raging in my body, and being played out on parts of my skin, to the outside world I was the same “indestructible” person my mother (and I) thought me to be. 

A few days after my son’s bar-mitzva (celebrated in our backyard with just our nuclear family and his best friend’s family), I brought myself to the skin clinic at Rambam, and with one look at me the admitting Doctor called in the senior doctors, the residents, the interns, and after marvelling at the presentation of this rare disease, they told me their thoughts. They would need to admit me, and begin a battery of tests to confirm their thoughts. The tests came back positive, I had joined a club of people suffering from a life-threatening auto-immune disease. 

But thank God I caught this in time. I am now 2 weeks into a hospital stay, being bombarded with steroids (prednisone, 100mg a day, and steroid creams and booster shots), and have made a tremendous amount of progress, thanks to the meds and the attentive staff here. I hope to go home soon and continue my fight to suppress this from home, and slowly wind down the steroid treatments. And yes, I look forward to a complete remission, and hope it lasts for a long time. 

Because it is a remission -- this doesn’t “go away.” The wonderful folks at Rambam and all the research scientists who have worked for decades made it possible for me to confidently say I am going to beat this thing, and hopefully keep under control for a long time to come, so I can fully return to the blessed life I lead. 

Yes, as we head here in the Holy Land toward another Covid-19 lockdown, I will most probably be immune system compromised (due to other drugs I am taking and will take). Yes, we will be home-bound for at least three weeks (our seven kids joining us for the lock-down, will be interesting). But with all of that, and all of the above, as we enter the new year I feel blessed. 

I live my life with the love of my life, Haviva, and together we are parents to seven incredible people, each unique, wonderful souls. We live in a great community, obviously not perfect, but have a house that is right for us, with beautiful views and steps off great hiking and biking trails. 

So in these final days of 5780, please count your blessings. And please, please, take care of your health. You don’t know how precious it is until you spend a few weeks on the inside of a hospital. 

Shana Tova U’metuka. Blessings for a sweet new year.