Hello Alfonso Perillo and I are 40 years of Ottaviano (Naples - Italy). Sorry for the language ...!
Forgive me if I start in a negative way my share of experience, but rather the bad start and instead instill hope in the end, so I hope you read my article to the end, I hope I never get bored.
They are the example that this condition, even after 18 years of perfect health, do not leave. I had the first platelet count 3000pt in 1980.
I was hospitalized Hematology T.E.R.E. Cardarelli Hospital in Naples, where, fortunately for us we met a Great Man and Great Hematologist Dr. CarloDe Rosa. I immediately started to be treated with cortisone and undergo almost the same day, the mielobiopsia and other tests which fortunately precluded the most serious diseases of the bone.
The cause?
Well ... the usual answers: maybe the flu, I ate a pear and then washed with no pesticides, aspirin.
From there began my adventure as you all, the swelling of cortisone, the childhood trauma done to limit the viability of games, cycling, football in the street .... In short, I was an only child and the limitations dictated by the anxiety of my mother were so many. Do not know how to treat a fever or a sore head or belly, kept me the use of NSAIDs (nonsteroidal anti-inflammatory drugs). Among other things I've always taken the Metamizole (painkillers), under guidance of Dr De Rosa, both of fever for the headaches .. I learned, however, find myself a space, perhaps because, in those departments sharing the pain, hope and selfless solidarity generated by moments of despair, patients with more serious, I began to have a clear sense of everyday life. I started to get me my freedom.
Dr. De Rosa, Prof. Montuori, observed over the years my case, although platelets do not stabilize with the cortisone, I have never wanted to splenectomy.
Meanwhile, my staff nurse Nunzia, my Mother, from 1980 to 1984 began to write down everything I ate: a crazy!
You and only you, deduced from this his personal study, there was correspondence between certain foods and platelet count:
Sausages (salami, prosciutto, mortadella, sausage). I still exclaim: Mhaa!
After a series of hematologists that literally laughed in my face, she and Dr.. De Rosa, the only crowds to hear it, maybe just to please a poor mother in anxiety, with the aggravating circumstance of one child, they decided to eliminate from my diet sausages.
After 6 months, since 1985, the plates into place without cortisone, after five years of ups and downs Fields.
A coincidence!
After normal adolescence through sport, school, music, lots of music, love, in September 1991, the memory of the disease was far away and after nearly seven years, believed to be forever healed, I began to renege on the sausages. On January 2, 1992 I found myself with platelets and 8000 without mentioning that he contracted flu or another at that time. We contacted Dr. De Rosa that I wanted to see her and after a careful monitoring of clinical hematology at the Cardarelli Hospital , sent me home with Urbason 80mg of intravenous steroid therapy:
1 st week: 16,000
2 nd week: 42,000
3 rd week: 72,000
4 th week: 111,000
Then deltacortene strong 60mg for about 6 months to climb and a few changes, finally settling between 180,000 and 230,000.
Hear, hear.: For 18 years.
Monitoring year. Obviously, already the day after the 8000pt counts, when in doubt, I would not feel even the smell of sausages.
We come now, working in the automotive world, I deal with systems of quality management company, a high workload, married to a wonderful wife, Imma, and two fantastic daughters Gabriella Gaia 7 years and 2 years.
In the meantime I had flu a dozen times with high fever, muffled with Metamizole (painkillers 20 drops), were the work of varicocele, and then I immediately anesthesia and then antibiotic (Rocefin - Cephalosporin), I had bacterial infections of the throat, always treated with antibiotic (Rocefin - Cephalosporin), the dentist uses Carbocaine as anesthesia, but nothing, the immune system a balance almost Gandhian.
The only precautions were those not using NSAIDs, and after 18 years of normal life, and the memory of a really far thrombocytopenia completely 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 at large, even in spite of my cholesterol.
On March 1, 2011 I found myself at work, while I was talking with my friend and director of establishment, with the usual bruises and petecchie. Obviously discomfort because I knew at that moment the count was well below the 20,000 platelets: 2000pt unfortunately.
My PTI, as in this case, it was always asymptomatic, have never even been bleeding with counts below 10.000pti. This is the first time I deal with for the first three days under the platelet 10.000pt with jelly and you start with 120mg of intravenous steroids urbason.
In 10 days we move from a 2000pt 54000pt PTI and then again no one seems refractory to cortisone, but it is still too early to tell. I know!
• I was discharged with 58.000pt ongoing basis with 100mg of deltacortene
• 102.000pt we arrived at 3.21,
• the 28/03 to 75.000pt.
But I have learned over the years, I believe that it is useless as you all keep up the numbers, we must stand by the LIFE FOREVER!
Dr. Carlo De Rosa when she saw me depressed, and noticed it from my sight, I was saying in Naples: “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 words, not very orthodox, 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 randomness' that sausage? I think so.
Third recurrence, it is true. Accompanied by this report with the sausages, it is true. But I still think the chance and I ask your opinion:
WOULD PROBABLY BE A FACTOR IN ALLERGIC AND THAT 'THE MAIN?
Of course the latter incident comes after two influences, and before I had doubled the dose of painkillers for a high fever: from 20gocce to 40 drops, never done before.
I'm reading so much, I realized that research has made some progress and the Nplate and Revolade are the tangible evidence that you have achieved truly outstanding results for our patients with ITP.
But what intrigues me and gives me energy to power the search for possible causes, is the fact that even today after thirty years trying to cure the symptom and is not the cause for the search before finding a cure more just and targeted, and this in my most humble and modest opinion is still ill from a strong limit for medicine.
I am living proof that with the PTI and long life is good and, 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 only .... and if you ask the sausages puts you at the door! '
A big hug
Alfonso Perillo
