Autoimmune Disease: Could You Be At Risk?

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By: , SparkPeople Blogger
3/7/2011 6:31 AM   :  49 comments   :  32,130 Views

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There are over one hundred known autoimmune diseases and another 40 diseases suspected to be autoimmune related.

Collectively they are one of the top 10 leading causes of death in women under age 65 and affect women 75 percent more often than men.

Sadly, less than 13 percent of Americans can name an autoimmune disease.

Back in 2002, I was diagnosed with an autoimmune disease and today am one of 50 million Americans that are. Since these diseases can run in families, I want my children to be aware of their risk. Do you know yours?

When the immune system mistakenly recognizes the proteins of the body as a foreign invader, antibodies are produced in response. These antibodies attack healthy cells and tissues throughout the body affecting almost any part of the body where these antibodies circulate including blood, kidneys, skin, heart, liver, lymph nodes, thyroid, and the central nervous system. Some of the more common diseases that result from this antibody attack include multiple sclerosis, myasthenia gravis, scleroderma, polymyositis, vasculitis, lupus, juvenile diabetes, Crohn's disease, thyroiditis, or Graves' disease.

Actress Kellie Martin is the national spokesperson for the American Autoimmune Diseases Association (AARDA) . She is encouraging people to know their family AQ or autoimmune quotient. This quotient is a way to assess how likely someone is to develop an autoimmune disease. Here are the keys to help you determine your family's AQ.

Understand autoimmune diseases position in U.S. health. While less than 13 percent of Americans surveyed can identify an autoimmune disease, over 23.5 million people suffer with them. When you consider that 9 million Americans are affected by cancer and 22 million cope with heart disease, the need for increased autoimmune disease awareness is apparent.

Get educated. The purpose of National Autoimmune Diseases Awareness Month is to spread awareness to help people learn more about autoimmune diseases. You can learn more by reading current research reports.

Know that autoimmune diseases run in families. Current research suggests a genetic component to autoimmune diseases but not from a gene mutation cause like with sickle cell anemia. Multiple genes seem to be involved in autoimmune disorders that increase the susceptibility. One specific gene is not passed on but rather several genes. Because of this, autoimmune diseases tend to "cluster" in families but may be expressed in different ways. One family member may have celiac disease while another experiences rheumatoid arthritis.

Know your family medical history. We live in a mobile society that results in family members living all over the globe. This can make knowing what is going on with extended family more difficult but no less critical especially where autoimmune diseases are concerned. It is important to take an inventory of family health problems beyond your immediate family to include grandparents, aunts, uncles, and cousins. Just as a family may share a family tree, including known medical conditions as another leaf on the tree is very important. When I found out I had an autoimmune disease, I questions my parents about what they knew about my relatives health. While not a lot was known or written down, we did discover a great uncle on my mother's side that died from an autoimmune disease. Since my diagnosis, my mother's sisters have experienced a variety of symptoms that could be autoimmune. The more you know and can share with your medical provider, the better they will be able to run the correct tests to help determine what is going on if an autoimmune disease should present itself in your or other family members.

Keep a symptoms list. It is very easy to overlook how symptoms might be related especially if you forget about something you are no longer experiencing. If you have any medical conditions that are autoimmune in nature, make a master list of all the major symptoms you have experienced. Update it as necessary and take it with you to checkups but especially when something new crops up in your health. Many times a specialist can use their experience with your symptoms list to see a bigger picture you didn't even know existed.

Realize that getting an autoimmune disease diagnosis can be challenging. It can take over four years for people to move from symptoms to an accurate diagnosis with many autoimmune diseases. Many times this also requires visits to a variety of medical providers, tests, and medications. One reason for this is different people experience different symptoms, even with the same autoimmune disease. The diagnosis can only be as complete as the information that has been gathered. Because so much of the information for diagnosis is subjective, there can be difficulty on both the patient and the medical provider's part in getting a clear picture of all that is going on. The better your symptom information and family history gathering the better the medical provider's ability to see the bigger picture more quickly.

The mystery of autoimmune diseases causes many to scratch their heads. Information can provide power and increased knowledge that can protect those you love. In order to protect my children and their children, I am going to take advantage of National Autoimmune Diseases Awareness Month to talk with extended family about their health so we can all increase our AQ.

Do you have a diagnosed autoimmune disease or symptoms that could be autoimmune in nature? Do you know your family AQ?


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Comments

  • AMSISTERS
    49
    My older daughter has had type 1 diabetes for 12 years and my younger one was diagosed a year ago with autoimmune hepatitis. The diabetes was a quick diagnosis; the second took longer and was misdiagnosed repeatedly as flu and then glandular fever (mono). Always make sure you see a specialist if symptoms won't go away. - 1/6/2012   10:36:26 PM
  • 48
    I have scleroderma. I too lucked into an excellent rheumatologist who diagnosed it quickly, ran baseline tests to determine the extent of its attack, and had me on medicine quickly. That was five years ago, and it seems not to have progressed since then.

    So many people have never heard of scleroderma. I'm glad that SparkPeople has brought the autoimmune diseases to people's awareness. Thank you. - 3/14/2011   11:52:51 AM
  • VKISAMORE
    47
    I've got relapsing polychondritis. Everyone on my mom's side of the family has an autoimmune condition - sarcoidosis, RA, DM, etc etc etc - 3/11/2011   9:42:51 PM
  • BOLAURAOK
    46
    I know people with Cohn's Colitis Fibromiagia Crohnic fatique and the list goes onThank You for the article . - 3/11/2011   6:01:41 PM
  • ELISACW
    45
    Another autoimmune disease that most people have not heard of is Parry Romberg Syndrome. One in six million people or less, have it. Its origin is unknown, there is no treatment, and it is devastating. It involves deterioration of one half of one's face. This past month had a special day called Rare Disease Day. Please add this to your list and let's hope to find a cause and a cure. - 3/9/2011   12:07:30 AM
  • CIRANDELLA
    44
    I can speak from personal experience that MS gets on your nerves! I wish the only kind of "autoimmune" in my life was automobile insurance... - 3/8/2011   9:56:35 PM
  • 43
    To @AMBERJONES254: don't know if you will see this, but I wanted to tell you that ITP *is* an autoimmune disease. My mother has it - she had the low platelet counts for many years, but they are relatively normal now.

    And going from there to the family AQ: my mom was also more recently diagnosed with 'juvenile' (insulin-dependent) diabetes, in her 70s (iirc, they call it "type 1.5" in such a circumstance). But like the ITP which eventually got under control, the diabetes is now under control and she's no longer using insulin. Her mother had rheumatoid arthritis. So I expect I will eventually be affected by an autoimmune disease, but I'm also hoping those genes will be suppressed by the ones I got from my dad's side of the family! - 3/8/2011   8:53:48 PM
  • 42
    It is good to see others raising awareness. I have lupus, when I was diagnosed the doctor I had then gave me 9 years to live. That was 21 years ago! I found a new doctor who was up on research and all types of therapies and options, he gave me informed choices about treatment options for my various symptoms...as I also have fibromyalgia, sjogrens, RA, and things I can't even remember.....

    I was very active as a board member for a local chapter of the lupus alliance and I also started a small jewelry business where I donate to Lupus researach thru purchases.

    I am up to the challenge of getting my body in better shape after a battle, but now remission!
    - 3/8/2011   3:44:52 PM
  • 41
    I learned that my dad has Celiac Disease then I learned about autoimmune disease and that it clustered in families. I have been diagnosed with Celiac and I am urging my sister to get tested as she has major thyroid issues. - 3/8/2011   12:45:11 PM
  • 40
    Thanks for this blog. I have Wegener's Granulomatosis and fibromyalgia (amongst a host of other, minor, players - seems like autoimmune stuff comes in clusters for an individual too!). Like you, I learned that autoimmune conditions run in families and indeed my maternal grandmother died of complications from an autoimmune condition and my mother and her sister both have autoimmune conditions.

    I will definitely be checking out AARDA and would love to see more discussion on Autoimmune diseases on SP. I think we need to raise awareness of autoimmune illnesses in general because, like you state so eloquently, they affect so many! - 3/8/2011   10:24:52 AM
  • HIKERJOHNSON
    39
    Two years ago I had all of the symptoms of Relapsing Polychondritis. Trying to find a specialists with an opening was impossible. I was finally treated by a pediatric ENT who was able to run tests and get my symptoms under control. I have had no symptoms since and my doctor believes that it may be a one time thing but said that if I have another flareup to get to the doctor immediately. - 3/8/2011   9:14:15 AM
  • 38
    My mother was diagnosed with polymyositis quite a few years ago and I have many friends with RA. The diagnosis of autoimmunity is a difficult process. I couldn't even tell you how many times my mother and friends were misdiagnosed. I hosted a golf outing for 5 years with proceeds going to AARDA and plan on having another this year. It is a great cause and the people associated with AARDA are terrific.
    - 3/8/2011   8:11:27 AM
  • AMYWOHOSKY1
    37
    thanks! i have type 1 diabetes, its always good to get more info especially for my kids health - 3/8/2011   1:17:03 AM
  • 36
    Thank you so much for bringing attention to this in the DailySpark blog! Like many others, I too have an auto-immune disease (dermatomyositis diagnosed four years ago this month). I am grateful to see others talking about this issue and sharing their stories. I didn't know March was an awareness month for us! I will definitely be spreading the word! :) - 3/8/2011   1:13:19 AM
  • 35
    I have Crohns disease...fun stuff...I was diganosed when I was fifteen but looking back had all the symptoms much earlier then that! Thank goodness for treatments like Remicade which I am now currently on! Ive been in remission for a while now and can live a halfway normal life! Some things still flare with stress and part of my intestines are to scarred to ever let me eat completely normal foods (like raw veggies) but im ok with that! Thanks for this post! Also I believe the crohns and colitis foundation have some sort of walking/running events in detroit annually in case anyone is interested!!! - 3/8/2011   12:44:36 AM
  • 34
    I have psoriasis. It flairs up with stress, so I practice YOGA and read Eckhart Tolle's "The Power of NOW" to stay mellow. - 3/7/2011   10:39:01 PM
  • 33
    I was diagnosed with Sarcodisis in 2000 - since then I have been learning a lot about autoimmune diseases. Thanks for raising awareness of autoimmune diseases. - 3/7/2011   10:25:41 PM
  • 32
    Thanks for the blog . Did not know of AARDA - 3/7/2011   9:36:32 PM
  • 31
    I was diagnosed with a collagen disorder about 18 years ago. For years my family told me my pain 'was all in my head'. Our family doctor thought it was growing pains. My mother didn't believe there was anything wrong until I got so bad I had to roll out of bed onto my knees and needed assistence walking. - 3/7/2011   8:29:45 PM
  • 30
    I have Hashimoto's Disease, my brother has psoriasis, my sister has MS, my father had diabetes, and my niece has Celiac Disease, so I am well aware that they are hereditary. I have no idea of my family AQ, but will bookmark your links for further reading, thanks! - 3/7/2011   6:21:48 PM
  • 29
    Thank you so much for bringing up this subject and spreading awareness! I have Autoimmune Hepatitis and was diagnosed 10 years ago. When I tell people about autoimmune disease I often mention that I can almost guarantee that they know at least one person effected by this disease category even though they may not have ever heard of it before. It is an immense issue that people need to be much more aware about! Thank you! - 3/7/2011   6:14:46 PM
  • ZOOLOVER
    28
    I found out I had Graves Disease but chance. I went to the doctor with blood test results from a life insurance policy denial. Lucky for me, after 2 years of trying to get the medication dosage correct, and losing 45 pounds, I went into remission and no longer have to take medications of any kind. I have made sure that my nieces and nephews know about this for their health. - 3/7/2011   4:26:26 PM
  • 27
    I'm painfully aware of autoimmune diseases since I have MS. - 3/7/2011   4:15:25 PM
  • 26
    I have MS, nobody else in the family does. All of these conditions are so *%&! frustrating aren't they. - 3/7/2011   3:56:14 PM
  • 25
    I have had Lupus for 18 years. My mother died from Lupus and I have a sister that also has it. I have a niece with rheumatoid arthritis and my son has just been diagnosed with rheumatoid at the age of 17. Thank you for the article. - 3/7/2011   1:59:45 PM
  • 24
    I was diagnosed with Lupus at age 16. That was really before they even knew how to diagnose it. It took them 6 months to diagnose me, months of steroids, pain, aches, skin hurting, hair falling out (because of the steriods). Today I am doing very well and can manage the aches and pains with the help of OTC medications. According to what I have read, it skips a generation. My grandmother had it (they think) and my grandchildren can have it, but as I am the only one in the family with it, I have been told that it may begin and end with me. Time will tell. - 3/7/2011   1:10:47 PM
  • 23
    my son has psoriasis, asthma, depression, and several mystery symptoms that are suspected as autoimmune disorder disease. thank you for this blog. - 3/7/2011   12:39:50 PM
  • HAVENMARIE
    22
    I really like this post. My daughter was diagnosed with juvenile dermatomyositis (affect the muscles, joints, and skin) three years ago on her 9th birthday. She had been sick for months. She had no symptoms other then she was weak and she really didn't have the strength to walk very far. She would be walking along and she would start dragging her feet because she was getting to weak to move her own feet. The other symptom she had was this butterfly looking rash on her face. I took her to her family doctor for 3 months and she just kept dismissing her as having an allergice reaction to something in the house, so we went to several more doctors. By the time we were able to get her to a doctor that would take her serious she ended up with a bad skin infection. If I would not have done my own research and BEGGED her pediatrician to check for lupus, then it would have been to late for her to get the much needed treatments. Needless to say we have since changed doctors and she is now 11 years old and getting better every day. She is now wanting to try out for cheerleading and soccer. She is finally happy again. Sorry about the long post but this is only a part of what she went through. So please, please watch for signs of autoimmune diseases even in your children. - 3/7/2011   12:39:39 PM
  • 21
    Hashimotos thyroidis . . . 13 yrs. and spent YEARS getting to the bottom of it. **SIGH** FINALLY when a Dr. actually took the time to LISTEN, things began to improve. It is a daily challenge, but one I am totally up for. Thanks for this blog. - 3/7/2011   12:22:59 PM
  • 20
    Autoimmune diseases run in my family. So I'm well aware of my risk! So far, I don't have any that are diagnosed. Although I do have some problems that are related. - 3/7/2011   11:41:36 AM
  • 19
    About 10 years ago, i was diagnosed with Chronic Urticaria (hives), that lasted approximately 1 year. there was no real cause and it was determined to be my autoimmune system. now 10 years later i am being tested for graves disease. - 3/7/2011   11:35:57 AM
  • AMBERJONES254
    18
    I just wanted to ask a questions about this post, something that u said really caught my eye. I have been trying to found a diagnosis for my problem and have had no luck. When i was 15 i was diagnosed with itp (low platelet count) they found it was because i had 3 spleens so they removed all of them. when i got pregeant with my son my white blood cell count went up. When he was born he also had low plates they think do to my white blood cell count being up and it was looking at him like foreign body. After i had him now 3 years later i still have the same problem they have check for everything from cancer to lupus all of it and still no diagnosis. when you talked about the immune system mistakenly recognizes the proteins of the body as a foreign invader, i couldnt help but question if this may be what i have. any answers or comments would be greatly appreciate. - 3/7/2011   11:31:10 AM
  • 17
    Thanks! I have an autoimmune disease - connective tissue disorder/SLE. I did not know of AARDA or SP's Autoimmune team. - 3/7/2011   11:22:49 AM
  • VPOPPY01
    16
    Love this blog! I've had lupus for about ten years now, and I'm very blessed to have it under control. My family believes that I might have gotten it from my grandpa who showed signs of lupus but was never diagnosed. - 3/7/2011   11:04:46 AM
  • 15
    I was diagnosed with ankylosing spondylisis and my mom is diagnosed with Chrone's disease. Interestingly enough, they are both on the same gene. Ankylosing makes exercise difficult and I already see the effects in my vision sometimes. I have to keep my weight in check just to make sure I can walk in future years. Thank you for this blog. - 3/7/2011   10:59:46 AM
  • SHARON03GRIZ
    14
    Thank you very much for this blog! I was diagnosed with Crohn's Disease as a teenager. My grandmother, sister, and niece suffer from it as well. The information you presented here is top notch. I hope everyone heeds the advice. - 3/7/2011   10:30:37 AM
  • 13
    My 20 year old daughter has Crohn's disease though nobody else in the family does. She has suffered for the last 6 years and just underwent an ileostomy last week. Her colon was removed along with her rectum and anus. Thank God we found an excellent doctor in the beginning. Learn all you can, understand that some diseases are invisible but that people may be suffering before you judge (like seeing a teenager riding a cart in the grocery store. She needs it, it is not for fun!) and if something seems wrong, keep searching and fighting till you get an acceptable answer. Thank you for this blog today. - 3/7/2011   10:12:12 AM
  • 12
    Thanks for bringing attention to the plight of those with autoimmune diseases!! I hope that it can help alert people who are hunting for a diagnosis. It is hard to believe but frequently MDs overlook these illnesses and patients go on for years without appropriate care. This is a great blog and a good resource for people looking for ways to find resources. Thanks! - 3/7/2011   10:07:58 AM
  • 11
    My daughter has lupus. I have environmental allergies. My sister-in-law has scleroderma. I have 4 female cousins with autoimmune disorders. And, I have too many friends with M.S. I don't think M.S. was on the list above. But as I understand it, M.S. is an autoimmune disorder.

    Good article to share with others. - 3/7/2011   10:05:52 AM
  • 10
    Thank you so much for this!! This is my 1st week with SP and last week I was seen by specialists for what they think is WG Vasculitis along with Rheumatory Arthritis. I have had symptoms for 5 years, but was only diagnosed after 4 conclusive biopsies last year. I am 35 years old and have a lot to live for. I refuse to let this kick my butt!! I have tracked my symptoms for the past year including photographs when joints swell or I have flare ups. I am glad to know its not in my head and that I am not alone. What a great article and again I cannot thank you enough! - 3/7/2011   9:53:11 AM
  • 9
    I was diagnosed with Sjoegren's last summer. Looking back, I've been showing symptoms for probably at least 10 years, but it took a new ENT to put it all together. The first rheumatologist I saw took a call me if anything happens attitude & didn't offer me much information - told me to look on the internet. The second one is so different & is much more active in tracking the progression of the disease. She ordered baseline tests on multiple body systems so that if/when the disease progresses, we know it. My one sister has Crohn's & my other sister hasn't been diagnosed with anything yet, but I wouldn't be surprised if she is in the future. - 3/7/2011   9:48:13 AM
  • 8
    Thanks for posting. I'm 53 and have had Graves' disease for 34 years, and Type 1 diabetes for almost 7 years. By the way, Type 1 diabetes is no longer called "juvenile" diabetes, mainly because so many children are being diagnosed with Type 2, but also because some of us are being diagnosed with Type 1 much later in life. - 3/7/2011   9:26:20 AM
  • 7
    Great tips here! And I have done just about everything here. From seeing various medical doctors...cardiologists(electrophys
    iologists), rhuemeis, endrocronologists, and others (can't really spell any of them!). I was diagnosed with POTS (postural orthostatic tachycardia syndrome) along with thyroid disorders, and sjogrens disease. Spark people has helped me change my life by losing weight and eating healthier and thus diminished my symptoms dramatically! I have a sister with MS and a sister with sarcoidosis as well as a cousin and aunt with MS. I always love when doctors tell me these things don't run in families! I have always kept a journal for many reasons. It helps me to understand why and when the symptoms occur but most importantly it helps keep the different specialists in the loop of what each are doing. Great article and here's hoping it helps others to understand the issues of chronic illnesses! Thank you for this!
    Anne - 3/7/2011   9:18:50 AM
  • 6
    I am so thankful that Sparks has brought this subject up for everyone to read and be aware of the number of conditions that are classified as being an autoimmune disease. I have SLE, Raynauds and more, and that's why I co-lead the Team at Sparks-Autoimmune Conditions! It's a medical condition that is sometimes not understood by others, but there are so many people that live their daily lives with certain aches, pains, rashes, fatigue -- you name it -- that it can even be difficult to explain it to others in words. But, with staying positive, doing certain exercises, choosing certain foods, finding ways to ease some of the symptoms and connecting with others that live with possibly the same sort of condition -- all helps with our daily way of living, our attitude to stay strong and stay on the healthy track. And, if you have an autoimmune condition, it's always nice to know that you're not alone and there are so many of us that do understand and care.

    Thanks again for sharing this blog! - 3/7/2011   8:31:32 AM
  • 5
    I was diagnosed with a rare liver autoimmune disease in 2001 (not caused by alcohol or drugs). There is no cure, but I was told that I would probably die from something else. I take my medicine every day and live each day as it comes. - 3/7/2011   7:42:09 AM
  • 4
    Thanks for posting! I have rheumatoid arthritis and hashimotos. My mother passed away from lupus complications, my sister has lupus, my oldest daughter has crohns, and my younger daughter has a yet undiagnosed autoimmune disease (more than likely lupus). It is absolutely essential that those of us with autoimmune diseases keep our bodies as healthy as they can be. We've already got enough strikes against us. - 3/7/2011   7:41:04 AM
  • 3
    I have myasthenia which is one that is not hereditary. The most important thing for me was that the 2nd time it flared (the first went undiagnosed) and I went to a neurologist, he was familiar with autoimmune diseases. I cannot stress how important it is to have a doctor who has experience. Also, there is a mysathenia foundation and I used them as a resources when my doctor suggested I get a 2nd opinion and for useful info. He was confident in his recommendations for treatment but since it included surgery he thought a 2nd was a good idea, as it is any time you are being told surgery is needed. - 3/7/2011   7:05:19 AM
  • JMMANGEL
    2
    It took a long time to get my husband's Crohn's diagnosed. I, on the other hand, lucked into a smart ER doctor who sent me to an excellent rheumatologist, who figured out I had a rare form of Rheumatoid Arthritis. It helped immensely that I had started tracking my symptoms after the first month. Write them down so your doctor has something to investigate. - 3/7/2011   6:51:05 AM
  • 1
    THANKS for posting this blog! I had no idea any organization existed like the American Autoimmune Related Diseases Association (AARDA)! Many members of my immediate, and as we're learning, extended family are affected by one and often more than one autoimmune disease. More and more they affect our total way of life and the quality of our lives sometimes. I have so much more to learn! - 3/7/2011   6:48:39 AM

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