Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Hi from Doll,
A few doctors seemed surprised that I have Sarcoidosis, and that my mother died of Waldenstrom's Macroglobulinemia, and her brother had Lupus Erythmatosis (sp?).
How about some feedback. Is mine an unusual case?
Do any of you have multi-generational autoimmune diseases?
My daughters are 26, 29 and 31. Needless to say, I am very concerned for them. Any medical fork out there? what screening, if any should they be having?
High cholesterol Nephritis Polyneuropathy Psoriatic arthritis Lupus Fibromyalgia Rheumatic fever Asthma Hyperthyroidism Pulmonary fibrosis Allergies Fever Multiple sclerosis Diabetes Weakness Allergic rhinitis Myasthenia gravis Diverticulitis Ulcerative colitis Cellulitis Vasculitis Rhinitis Erythema nodosum Lactose intolerance Rheumatoid arthritis Porphyria Scleroderma Endometriosis Spondylitis Sarcoidosis Osteoarthritis Graves' disease Ankylosing spondylitis Autoimmune diseases Arthritis Psoriasis Rashes Pain Limited scleroderma Tuberous sclerosis Hypothyroidism Cystic fibrosis
My cousin has Crohns and my great aunt has RA, all from my dads side of the family. I am not aware of any screening, but I do think we need to be looking for signs of autoimmune diseases in our children.
Jennifer
Hi Doll,
Autoimmune diseases do tend to run in families - at least many of them. These do not always (or even typically in my experience) stick to the same ones. It is not uncommon, though, to see a family history of RA and thyroid disease and auto-immune diabetes run in the same family. That being said there are two things you should consider: 1) Sarcoidosis is not a "typical" autoimmune disease - as a matter of fact no one really know is it is autoimmune. Jury is still out on what causes it. 2) Family history means your children should be informed to be vigilant for symptoms but not hyper-vigilant and there really isn't any screening to do on them if there are no symptoms.
There are really two reasons to counsel against screening in the absence of symptoms. First, would have no idea what to screen for among the hundreds of possible autoimmune diseases and specific tests that are out there (I shudder to think of the cost and the amount of blood that would be required to run them all). Second, finding a positive lab, say an auto-antibody to the thyroid gland, really won't alter the disease or the treatment if symptoms haven't developed yet - at least I'd be unlikely to start a patient on hormone replacement or eradicate the thyroid without symptoms of disease. This means that a positive test leaves you right where you were anyway with just family history - aware that any symptoms that develop should be worked up sooner rather than later.
The best approach is just to be aware, and if you start to see rashes or joint pain that can't be easily explained - or more likely clusters of symptoms - work it up then with a focus on the specific symptoms.
Just the view of a single medical folk - hope that makes sense.
Greetings. Studies have indicated that there's a propensity for autoimmune disorders to run in families, although, as far as I'm aware, they haven't found a linking gene. In my family we have diabetes (my aunt is type 1), and my grandmother had an undiagnosed neuropathy. I have sarcoidosis, as well as CIDP (in which the immune system attacks the peripheral nerves) and possible vasculitis (an attack on the blood vessels).
The American Autoimmune Related Diseases Association (www.aarda.org) has a lot of very good information on these diseases.
Deb
London
My mother has celiac, my father has porphyria and my sister has MS. Prior to my parents' generation, there doesn't appear to be any instance of auto immune. My sister also had asthma/eczema as a child, and both my mother and I have it now. As for my children, both appear to be free thus far, though my eldest was diagnosed with Aspergers, and in the naturopathic community, there is some speculation that it is autoimmune as well, due to a person's inability to absorb nutrients and a tendency towards gut issues. To my knowledge this has not been confirmed in more traditional medicine, however.
Good morning, brother with ms, nephew with Chron's father also has Waldenstoms
Yes, that makes perfect sense. Thank you. I have an ongoing genealogy project. In my father's family people live to be 85 - 110, unless they abuse tobacco and alcohol. My mother and her family have the autoimmune diseases.
hello! My rheumatologist says that yes autoimmune diseases do run in families but that doesn't mean everyone will have the same one. My mother has sjogrens and polymyocitis. My brother has MS. I have sarc, my aunt has pagents and I have a cousin with lupus and my great grandfather died from lupus. I have another cousin with lymphoma but I dont think that is autoimmune.
I have sarc - my sister has MS -
Not sure what that all means but I think there may be a genetic susceptibility link to it all.
Hi,
I have Sarcoid and Graves Disease, another sister with sarcoid, 3 with MS (all 5 girls in our family, none of my 4 brothers has autoimmune), daughter with thyroid (hashimotos), niece with raynods, mother had Bells Palsy and sores on her arms that itched and wouldn't heal, now I wonder if she had sarcoid. I remeber reading about a gene that was isolated only a few years ago, it seems like it was called i9 that caused autoimmune syndrome. I remember reading that if you had an autoimmune disease, it wasn't at all unusual to eventually have a second and there was an inherited factor.
I am really suprised how many people with sarcoidosis have siblings with ms- what is the connection?
Angie
I have sarcoid, my sister and one aunt have Reynaud's -- we don't yet know what it is secondary to, my grandmother had RA.
I have sarcoid, my mother had Reynaud's phenomena, and my maternal grandmother had really, really, really bad RA. Go figure! This is actually a fascinating thread. It's a non-random sample of people, but still, I think it provides some strong evidence. I'd bet it has to do with HLA type.
I have sarc, mom has systemic lupus and brother had type 1 diabetes.
I supposedly have sarc although not 100% diagnosed (im 23) my younger sister (age 22) got diagnosed with Raynauds at 16 and now they are testing her for Lupus
I have sarcoid of the lungs, brain and uveitis, my father had spondylitis, my brother has diabetes, two nieces have crohns, another niece with RA, nephew with colitis so I would say that it is in the family.
I have sarcoid and my sister has an autoimmune disease that affects her kidneys she has had 3 kidney transplants. It is called glomural focal nephritis. I am sure I spelled some of that wrong. So far none of our children have any autoimmune diseases. Our parents did not, nor our aunts or uncles.
My family certainly has is an auto-immune mess. I have sarcoidosis, my brother has multiple sclerosis, my daughter has lichen sclerosis, my nephew has cystic fibrosis, my niece has cystic colitis, and my mother has alzheimers (a scan of abdomen recently showed nodules in her liver ... sarcoid perhaps?) Any relationship? I'd say so.
My grandfather had Reynaud's. My Dad & Mom, as well as my Uncle had alopecia. I found that last tidbit out after I was diagnosed with alopecia...
Hi...it's me again. I've been in touch with my first cousin who lives in another state. This is the daughter of my maternal uncle who had lupus. I just found out that she has at least 2 autoimmune diseases. She has macular degeneration...both eyes and is on oxygen. I'm planning a trip to visit her in a few days. I'm sure I can't solve any great medical riddle, but I can gather information...so the next generation will have it.
I'll let you know what I find.
Thanks for so many great replies. I hope this thread has brought our community closer in some way.
Doll
I am new to this community. I have not been diagnosed with Sarc - yet - but I know I will be soon - all of the symptoms are there. I was diagnosed with Limited Scleroderma in 1998. In my family, my Mom had Scleroderma and died at the age of 56 from a brain aneursym. Six of my 10 siblings have various pulmonary diseases - from "asthma" to COPD. I have a son with Tuberous Sclerosis and a daughter with Polymyocytis. There are others in my family with autoimmune disease symptoms - but without a diagnosis.
I too was told for years that these types of diseases are not hereditary, but I think my family is clearly an exception to that rule. As children, we were all exposed to silica dust and asbestos, and only God knows what else, which was reportedly used to insulate the pipes in public housing projects that were built in the 1940's.
Is there a connection between asbestos exposure and pulmonary and autoimmune diseases?
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
Add to the discussion