by Anna Lisa Riccardi
Pemphigus patients in Italy experience problems very similar to patients in other countries.
The first problem consists in being correctly and quickly diagnosed. If the disease appears only in the mouth there are great chances that it will take a long time as most of the middle-aged Italian dentists have cursorily studied pemphigus at university and are therefore unable to recognize it. I remember that when my dentist saw my mouth (I had already been diagnosed and on prednisone) he told me that he had seen a mouth like mine only in a dead body and he advised me to take a lot of vitamins. It goes without saying that I ran away and changed the dentist. In fact the new generation of dentists have studied pemphigus better and are much more experienced.
If pemphigus appears on the skin, chances of a quick diagnosis are greater. Almost all the Italian cities, even the smallest ones, have at least one general state hospital and good doctors (although not all have a dermatological department). Besides, the visit of a hospital doctor costs approximately 30% of the current rate, the remaining 70% is paid by the State. Hospitalization, when necessary, is entirely free and so are all the tests and medications. Terefore, when Italian are sick, they usually go to the nearest hospital. Obviously Italian hospitals are very full, it takes hours to be visited and often there is a waiting list to be hospitalized (not for serious diseases, Cependant). The "PV patient to be" will be seen by a dermatologist and requested to stay for at least one week to have all the examinations done, including a skin biopsy. Unfortunately hospital doctors are so busy that they do not have much time to explain and follow a patient singularly. The standard behaviour is: "You have pemphigus, it is a serious disease although not deadly, you will have to start prednisone." Full stop. The poor patient is at a total loss, he tries to understand the name "pemphigus" and gathering courage he shyly asks: "What is it?, How does it come? Why me?" If he is lucky someone will tell him that it is a bullous disease (thus confusing him even more) and that nobody knows yet what triggers it. Totally nonplussed the patient will be sent home feeling like a leper with an unknown and unpronounceable illness, alone in the world.
Another problem arises when the treatment is prescribed. Not all doctors (especially in the smaller Southern towns) know how to treat pemphigus. That is, they know what to give (prednisone + immunosuppressant) but sometimes they don't know how much and for how long. I became friend with a young lady, weighing no more than 48 kilos, who was on 100mg of pred per day. After one month of this dosage she hardly recognized her husband and daughter. In another case, a man, this time, pred was stopped too early and now the poor man is fighting against a much stronger PV.
I was lucky for three reasons: first, I had PV only on my body so I went straight to a dermatologist and was diagnosed almost immediately; second, I live in Rome where there are two dermatological hospitals, both well known, and my dermatologist was working in one of them called "I.D.I. – Istituto Dermopatico dell'Immacolata". The level of this hospital is high because it is also a place where research is done. They follow the latest techniques, doctors participate to International conventions and they have a most modern and updated immunology laboratory. Third, I changed the dermatologist after a while and found a yound experienced doctor who, though working at I.D.I. as well, is always available and willing to explain. Most of the pemphigans I came in touch with since my name was included in the Foundation's support group, are now treated in Rome by my doctor, though no one lives here and they often have to undergo long journeys.
I have been told that there are other good dermatological departments in Milan, Chieti (on the Adriatic coast) and Naples. In this town a Dr. Ruocco has his own clinic specialized in bullous pemphigoid.
PV being a chronic disease, the Italian State grants the patients some limited benefits. Corticosteroids and immunosuppressants are free as well as immunofluorescence and other blood tests connected to the pathology. Every year the PV patient's position must be reviewed and renewed at the local sanitary office, where a card in the name of the patient and stating the disease is issued. Tests to ascertain some other diseases deriving from our medications such as gastritis or osteoporosis are also free, providing they are done in a public structure.
On the working side there are no special benefits for pemphigans. We are included in the general legislation whereas, presenting a medical certificate, you are allowed to stay at home for a maximum period of one month, still getting your salary.
I would like to conclude by saying that, as everywhere else, Italian PV'ers are scattered throughout the country, sometimes they live in very small cities, not all understand or speak English, they all feel very lonely. If they find, some way or another, the Foundation's site on the internet, they are half cured. When they find another person with the same disease speaking their own language they are definitely better. I know it well; it happened to me.