Hello,
I am among those patients suffering from a rare and incurable disease that decided groped with stem cell therapies. For about six years I have a diagnosis of primary progressive multiple sclerosis, worse every day and even the cortisone until now has given me relief, for me there is not much to do.
I hear often on TV and read in newspapers that we are deceived and cheated by false illusions and this thing offends me a lot because the reality is more complex than told.
I am aware of my choice, I have thought long and without influence me from anyone. Then, in December 2009, I decided to go despite the negative opinion of doctors and the bad reputation of these therapies. Was a difficult decision, but now I'm really glad I did.

I feel better and this goes for me more than any rumor.

I do not want to wait for someone to find the elixir of life, I just have to do everything possible now.
Personally I think is better to use the best available knowledge now and does not seem an impossible goal.
Anyone, like me, who has a rare disease is completely alone, without even a minimum relief that makes bearable the disease. Yet there is some remedy, certainly does not solve the problem, but it reduces.

My experience with the stem cells has been so positive that I'm thinking about the possibility of repeating the treatment. Of course I’m not recovered, but I feel better and for the first time from the beginning of the disease, have mitigated the pains, I regained control of the bladder and I recovered the sense of touch.

No one has promised me miraculous healings, I just tried something new rather than the usual cortisone without benefits and with many side effects.

The problem is much deeper and requires serious analysis, not the usual false moralism, by which is judge and condemned without knowing or reflecting more general and objective.

I have some questions that I can not find answers, as:
The research in our country what purpose and objectives pursues?
Somebody monitors and oversees the search results?
There is some merit criterion for allocating limited funds available?

I wonder why they prefer to rise to the role of defenders of the patients who decide to act as "guinea pigs" and pay themselves and not using the same vehemence to defend common interests! I really do not understand ...

I am grateful for this opportunity and if we make an ethical discourse then we need to go back upstream, we can not rely the market for everything and then complain of the consequences. The same severe criticism should be applied to all reality.

How many hospitals close some departments because they were considered unproductive? There are striking examples in the daily news.

Paradoxically, for me that I have big handicap, is more comfortable getting on a plane and get where is offered a package ‘’all-inclusive", rather than making long waits and files to do visits and clinical examinations in themselves, then fail not intervene and resolve on any symptoms. Nevertheless all the clinical examinations and any therapy have a cost even higher than stem cells, only that in the first case pays the community in the second case, the patient, without being financially supported by anyone. In practice, the choice he is denied with the excuse of lack of scientific evidence.

Today on treatments offered to people with MS, we should expect more information about the real benefits and risks related to our therapies. Would be appropriate that each patient has accurate and complete information, about this matter those who wish to obtain information can read the reviews of the Cochrane Collaboration and others, the doubts on the effectiveness and usefulness of treatments "officers" are really many.

I think it would increase transparency on all fronts, each patient should be aware of all the risks and potential benefits and to choose the treatment that it considers most suitable.

Raffaella – Lamezia Terme, 27 April 2010

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