The Romberg's Connection 2009 Survey Results

Others With an Autoimmune Disorder

Page 105. VII. Miscellaneous Questions cont.: Others with an autoimmune disorder
1. Please select any Autoimmune disorders for non-Romberg family members:
Autoimmune disorders Responses
(96)
% of Number responding
Addison's disease (adrenal)0
0%
Ankylosing spondylitis0
0%
Autoimmune Thyroid disease6
17%
Arthritis14
39%
Celiac disease4
11%
Chiari Malformation0
0%
Chronic Fatigue Syndrome3
8%
Crohn's disease2
6%
Fibromyalgia5
14%
Goodpasture's Syndrome (lungs, kidneys)0
0%
Graves' disease (thyroid)2
6%
Guillain-Barre Syndrome (nervous system)1
3%
Hashimoto's thyroiditis2
6%
Hughes Syndrome (antiphospholipid)0
0%
Inflammatory bowel disease2
6%
Lupus (SLE)3
8%
Mixed Corrective Tissue disease0
0%
Multiple Sclerosis (MS)4
11%
Polymyalgia Rheumatica (large muscle groups)0
0%
Raynauds Phenomenon6
17%
Scleroderma (skin, intestine, less commonly lung)1
3%
Scleroderma, linear0
0%
Scleroderma, localized1
3%
Sjogren's Syndrome1
3%
Systemic sclerosis0
0%
Temporal Arteritis / Giant Cell Arteritis (arteries of the head and neck)0
0%
Thyroid problems11
31%
Type 1 Diabetes Mellitus6
17%
Ulcerative colitis3
8%
Vitiligo6
17%
Other (Specify) 13
36%
Number responding = 36 / percent responding = 25% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.




Page 105. VII. Miscellaneous Questions cont.: Others with an autoimmune disorder
2. Comments for Autoimmune disorders:
Responses
(10)
A few older adults in parent's families have been diagnosed with:
1. Raynauds (Mild)
2. Vitigilo
3. Psorasis
4. Arthritis
My mother has one form of Lupus, while my daughter has SLE (systemic lupus erythematosus). My baby sister has grand mal seizures and the doctors can't figure out why she has them.
Paternal grandfather has diabetes. Paternal uncle has Crohn's.
I myself have Raynauds Phenomenon.
Both my husband and I have several family members with autoimmune disorders.
Lichens Planus
1 illnes for three of my family members
paternal aunt
Myself and other children have problems.
My mother (m y daughter's grandmother), and a neice on her father's side has ITP (idiopathic thrombocytopenic purpura).
Number responding = 10 / percent responding = 7% 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.