When were you diagnosed with CF & SS
With SS before CF - 0.0% - 0 votes
With CF before SS - 0.0% - 0 votes
I only have CF. No SS - 0.0% - 0 votes
I have dry eyes and mouth but have not been diagnosed with SS - 0.0% - 0 votes
nbvet
New Member
Joined : Apr 2016
Posts : 10
Posted 4/30/2016 10:13 PM (GMT -7)
My wife was diagnosed in 2009 with CF after many Doctors over 10 years said it could not be. She was 66. But it was. By 2009 it had damaged her heart (probably from poor absorption of some vitamins), caused her to lose all her large intestine and had multiple intestinal blockages. Her response to the addition of Creon with everything she ate was dramatic - few blockages, more consistent output in her ileostomy bag and a marked improvement in cardiac output. Her lung function has been moderate throughout.
Recently, following a stick injury to her cornea, she has developed Chronic Corneal Ulcer Syndrome exacerbated by poor tear production. She often has a dry mouth and it is suggested she has Sjogrens Syndrome (SS). Tests so far are inconclusive, ANA is suggestive, ESR is raised as oft in CF but others tests are negative. We are waiting for a Doctor to agree to do a lip biopsy.
Sjogrens is an autoimmune disease often following a viral or other infection. I have only found 1 case of CF & SS but with the chronic inflammation of CF it seems that they may occur together?
Has anyone with CF had experience with SS? What has been your experience?
Tim Blowfield