The Romberg's Connection 2009 Survey Results

Autoimmune Disorders

Page 57. IV. Triggers (page 1 of 2) cont.: Autoimmune disorders
1. Please select any Autoimmune disorders that the affected person has:
Autoimmune disorders Responses
(48)
% of Number responding
Addison's disease (adrenal)0
0%
Ankylosing spondylitis0
0%
Autoimmune Thyroid disease5
18%
Arthritis6
21%
Celiac disease0
0%
Chiari Malformation1
4%
Chronic Fatigue Syndrome2
7%
Crohn's disease0
0%
Fibromyalgia2
7%
Goodpasture's Syndrome (lungs, kidneys)0
0%
Graves' disease (thyroid)0
0%
Guillain-Barre Syndrome (nervous system)0
0%
Hashimoto's thyroiditis3
11%
Hughes Syndrome (antiphospholipid)0
0%
Inflammatory bowel disease2
7%
Lupus (SLE)1
4%
Mixed Corrective Tissue disease0
0%
Multiple Sclerosis (MS)0
0%
Polymyalgia Rheumatica (large muscle groups)1
4%
Raynauds Phenomenon3
11%
Scleroderma (skin, intestine, less commonly lung)0
0%
Scleroderma, linear8
29%
Scleroderma, localized6
21%
Sjogren's Syndrome0
0%
Systemic sclerosis0
0%
Temporal Arteritis / Giant Cell Arteritis (arteries of the head and neck)0
0%
Thyroid problems4
14%
Type 1 Diabetes Mellitus0
0%
Ulcerative colitis0
0%
Vitiligo4
14%
Other (Specify) 5
18%
Number responding = 28 / percent responding = 20% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.




Page 57. IV. Triggers (page 1 of 2) cont.: Autoimmune disorders
2. Comments for Autoimmune disorders:
Responses
(11)
Thyroid problems run in family in the women. My mother has had both underactive and overactive and a goiter.
Not sure if this applies here, but in case I forget..... I was 13 when I first became ill with Lupus.... had been out collecting sap with an uncle and cousins and came down with an awful case of strep throat... that turned into chest pains, etc.. eventually went to the school nurse who took my temp (after strep cleared up) she called my mom to take me to hospital, who in turn did an X-ray of my heart which was enlarged to 2X normal size - years later did they finally diagnose Lupus. This was all around a year or so before first signs of PRS showed up - the discoloration near chin - in fact, I first asked my Lupus Dr. about it. He said he didn't know what it was.... hmmm??
Eczema? Not sure if it's autoimmune or not.
Ugh
I have had Lichen Planus for over 25 / 30 years. I am asymptomatic, but since it is a pre-cancerous condition, as recommended by my dentist, I now see a specialist at the University of Pennsylvania every 6 months just to keep a check.
I believe that PRS is an autoimmune disorder.
I have seen an autoimmue specialist and she has done extensive testing for autoimminue disorders. The results have shown that I do test positive for autoimmune disorders. I have Lucopenia (a chronic low white count) and other autoimmue disorders.
My blood tests are also positive for scleroderma, and I had Herpes Zoster just before the onset of the Romberg's symptoms.
alopecia areata, eczema, sinus canal problems
none
very demoralizing
Number responding = 11 / percent responding = 8% of total respondents (143).



Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.