I am forty-three years old, and when I was twenty-six I was diagnosed with Sjogren's Syndrome, but I had probably suffered it for years. The episode that brought it out was my second pregnancy. My second child suffered a bit from the effects of my Sjogren's: he has a heart problem, is diabetic and insulin dependant and two months ago he was diagnosed with angioedematous syndrome (after two episodes of angioedematous urticaria with Edema Quincke).
I try to live well with the illness. I am in treatment with Clorochina, Bisolvon, Tauxib, Nexium, Siccafluid and vaginal gels. I have seven to eight episodes of candidiasis a year, none cystic. I also suffer from total xerophtalmia on my left eye and almost total on my right where there is also a mild macular degeneration. I have migrant polyarthritis and enormous digestive problems.
However, I feel alive and positive. I have learned from my son that you cannot give up. He has shown me that a little boy can get over the shock of a serious malady like his (he has to take four to five daily shots of insulin and as many glycemic controls; he lives his life full of happiness regardless). He plays football at a good level and he is brave. He goes to the Istituto Alberghiero Specialization Cucina-Hotel management school with a specialization in culinary arts--not a bad choice for a diabetic!)
The day I took him to the hospital and he met a boy with a thyroid tumor he told me that he was really fortunate.
My message is, there is always someone who is worse off than we are. Waking up every morning with a smile on our lips is good for both us and the people we love, and it makes any situation bearable, especially because we cannot forget that the illness is also working psychologically. For example, the time when I actually felt worse was when they diagnosed diabetes to my son.
These days I work, I take care of my home and family, I go to the pool to do some aqua gym (works good for arthritis pain too), I follow my children in their sports passions and I am a great fan. I don't miss a single game. My husband supports me in my worse moments, and also with his love. Last year my sister-in-law died of a brain tumor, right after giving birth to a wonderful baby girl. My brother suffers a lot and he had to reprogram his whole life. These are real dramas. Keep on fighting, tomorrow is another day.
Email: [email protected]
Story edited 11-20-06 JTD
Story posted 11-28-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
(Italiano) Lu: Sindrome di Sjogren
Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.