An ITP Story from Naples, Italy

Hello, my name is Alfonso Perillo. I am 40 years old, from Naples, Italy. Please excuse any grammar mistakes—English is my second language! Forgive me for beginning my story negatively, but I’d rather start with the bad and end with the good. My story is a great example of how even after 18 years of good health, the symptoms of ITP can still come back and affect your life.
My first instance of low platelets (a count of 3,000) was in 1980. I was hospitalized in Hematology T.E.R.E. Cardarelli Hospital in Naples, where, fortunately for us, we met a great man and great hematologist: Dr. Carlo De Rosa. He immediately started treating me with cortisone and tested me for mielobiopsia and other conditions which preclude the most serious diseases of the bone.

What did they think caused my low platelets?  Well ... the usual answers: maybe the flu, I ate a pear that had pesticides on it, aspirin.   From there began my adventure as you all know: cortisone, dealing with a childhood of not being allowed to participate in games like soccer or biking with my friends. I was an only child and faced many limitations dictated by the anxiety of my mother: Not knowing how to treat a fever, sore head, or belly ache all kept me on the use of NSAIDs (nonsteroidal anti-inflammatory drugs). Among other things, I've always taken  Metamizole (painkillers) for fever and headaches, under guidance of Dr De Rosa.

I learned, however, to find myself a positive space, perhaps because, being in the hospital sharing the pain, hope, and selfless solidarity generated by moments of despair with patients with much more serious conditions, I began to have a clear sense of everyday life. I started to get my freedom.   Dr. De Rosa and Prof. Montuori met with me regularly, although my platelets did not stabilize through the use of cortisone. I knew I did not want to have a splenectomy.

My mother (who also served as my nurse) recorded everything I ate from 1980 through 1984. Crazy! She deduced that there was a correlation between my low platelet counts and certain foods that I consumed: Sausages (salami, prosciutto, mortadella, sausage). After a series visits to hematologists who literally laughed in my mother’s face, Dr. De Rosa and my staff nurse decided to listen to her, maybe just to please a poor, anxious mother with a sick child. They decided to eliminate sausages from my diet. After 6 months, since 1985, my platelets stabilized without the use of cortisone.  A coincidence?!

After living a normal adolescence through sport, school, music, lots of music, and love, my experience with ITP had nearly faded from my memory after seven years without trouble. I considered myself healed. Then, in September 1991, I started eating sausage again. On January 2, 1992 I found myself with a platelet count of 8,000 even though I had not been ill with the flu or other viruses. We contacted Dr. De Rosa, who monitored me in the Hematology Clinic at the Cardarelli Hospital. He sent me home with Urbason 80mg of intravenous steroid therapy. My platelet counts after week one were 16,000. At week two they were at 42,000, week three they were at 72,000, and by week four they had reached 111,000. I took 60 mg of Deltacortene for about 6 months to continue my platelets’ climb, finally settling between a count of 180,000 and 230,000.

Here I am, at present. I’ve monitored my platelets annually for the past 18 years. Obviously, after my relapse of dropping to a platelet count of 8,000, I won’t even smell sausages. I work in quality management for an automotive company now, and cope with a heavy workload. I am married to a wonderful wife, Imma, and have two fantastic daughters: Gabriella, 7, and Gaia, 2. I had flu a dozen times with high fever, which was eased with Metamizole (painkillers 20 drops), the work of varicocele, and then antibiotics (Rocefin - Cephalosporin). I had bacterial infections of the throat, always treated with antibiotic (Rocefin - Cephalosporin). My dentist uses Carbocaine as anesthesia, but nothing, the immune system has a balance almost Gandhian.   After 18 years, my bad memories of thrombocytopenia have healed.

What would you do regarding the delight of a good pizza from Di Matteo in Naples to Decumani Salame Neapolitan? Call me stupid, but I after 18 years, I started to eat sausages again, even in spite of my cholesterol. On March 1, 2011, I was at work, talking with my friend and the company director. I noticed the usual bruising and peteccie associated with low platelets, and knew at that moment that my count was below 20,000 (it turned out it was at 2,000). My ITP is always asymptomatic, and I’ve never had bleeding with counts below 10,000. This is the first time I dealt with counts fewer than 10,000 for three days. I was treated with jelly and 120mg of intravenous steroids urbason. In 10 days I moved from a count of 2,000 to 54,000, and I seem to be doing well with cortisone, but it is still too early to tell. I know!

I was discharged with my platelets at a regular 58,000 with 100mg of deltacortene. On March 21, my count reached 102,000. By the 28th of March they dropped to 75,000. Over the years, I have come to believe that it is useless to follow the numbers closely; we must stand by the LIFE FOREVER!   Dr. Carlo De Rosa saw me in Naples and knew I was depressed. He said, “Affòòò tu stai buono, si numme dai na mano ai voglia e fa 'o cortisone…!!! E nun te preoccupà che non muori!!”  " Perhaps a few not-so-orthodox words, but that shook me and made me realize the energy I needed to go ahead and come from 10 years to 40 years without the slightest problem of coexistence with acute ITP.   Always a random occurance after sausage? I think so.

That was my third recurrence of ITP after eating sausage, it is true. But I still wonder, and I ask your opinion: Would the main factor in this probably be that I am allergic to sausage?   Of course the latter incident could come from two influences: sausage, or maybe because I had doubled the dose of painkillers for a high fever: from 20gocce to 40 drops, which I have never done before.   I'm reading so much, and have realized that research has made good progress and that Nplate and Revolade are tangible evidence that doctors have achieved truly outstanding results for patients with ITP.   But what intrigues me and gives me energy to power the search for possible ITP causes is the fact that even today, after thirty years of trying to cure these symptoms, the search has become more focused and targeted. And my most humble and modest opinion, is still ill from a strong limit for medicine.  I am living proof that you can live a long, good life with ITP. Of course, you’re all invited to eat a pizza in Naples, this time by Michele ‘a Forcella. Yes, because Michele ‘a Forcella  Margherita and Marinara is best .... And if you ask for sausages, you’ll be put out the door! '  

A big hug-- Alfonso Perillo 
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