But many of us in Italy?

How many are in Italy patients with systemic sclerosis?

Reliable data are not available, we have only approximate figures, probably underestimates of the real cases, including those still in pre-scleroderma or not yet diagnosed.

This is also proof of how this disease is an orphan!

But the story rewrites and those who live in the midst of this "Babel," the association has launched a survey for the sole purpose of gathering information for estimates closer to reality.

E 'can also take the survey anonymously, please fill out the form to inform and help you too!

Click on the link http://www.sclerosistemica.info/1-2-3-per-contarci-ricominciamo-da-te.html

Italian League Onlus Systemic Sclerosis
April 20, 2011

Posted in Associations - activities

3 Responses to "How many are in Italy?"

Aurelia Armetta:
April 25th, 2011 at 18:48
Hi,
I am affected by this disease for many years. Have been followed before in Geneva and then to San Marino by the team of Prof. Mitchell. Now I always follow Dr. Berti of San Marino who periodically came to Cagliari.
Precise that the disease was diagnosed in the department of Prof Giacco in Cagliari.
I went through many therapies: methotrexate, azathioprine, sandinum neoral, pemine and many others.
Currently my respiratory system is very bad, so I also followed the hospital Binaghi.
We asked if there was a specialized center in Cagliari for this condition, Dr. Berti is considered that the two years that is not in Cagliari and I will go ahead only with drugs for the respiratory system .. but I notice a considerable worsening of the skin. Thank you for your attention
Aurelia Armetta
Via Amendola 47 / A
09045 St. Helens
Admin2 :
April 26th, 2011 at 14:23
Hello Aurelia
If the site vai http://www.sclerosistemica.info I care to site me here - then select Sardinia you will find a list of treatment centers for SSc in your area.
My advice is to contact as soon as the center and ask for a visit. From what you say I guess you're treating pulmonary hypertension, but you no longer have consulted a rheumatologist.
For anything not hesitate to write: info@sclerosistemica.info or call us at 02-898 66 586
elisabetta:
October 7th, 2011 at 08:48
Hello, I am affected by les from nearly 25 years and about 10 years I have discovered the sclerodermia.Sono a person who has always exceeded all diffocolta, (and nn were few), but unfortunately now I have a problem that still does not rieso to somatize. My illness has given me a strong osteoporosis with multiple fractures to the column. But at 45 years still is not now that she wins.