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50 Million Americans Have an Autoimmune Disease
March is National Autoimmune Diseases Awareness Month Get Involved, Today! The American Autoimmune Related Diseases Association (AARDA) is a 501 (c) (3) tax-exempt charity
During this time of year American's should collectively take notice of the 50 million of our friends, family, and co-workers who suffer every day with one or more of the 100+ autoimmune diseases. This is a category of disease which affects more American's than Cancer and remains one of the top 10 killers of women under the age of 64. This month, the American Autoimmune Related Diseases Association (AARDA) will launch an awareness campaign titled, "We are 50 Million." The campaign will spotlight autoimmune patient stories from around the country. Patient's answering the question, "How Many of the 50 Million Does Your Family Represent?" The answers to this question highlight some important facts about autoimmune diseases, facts which every American should be aware. 1. 50 million Americans have an autoimmune disease comprising a major U.S. health crisis Get Involved! Help AARDA Raise Awareness of Autoimmune Diseases. Download these ads and email them to friends and family, post them on bulletin boards in your places of work or worship. Email us at aarda@aarda.org and let us know where you posted these and Got involved with National Autoimmune Diseases Awareness Month.
Get to know the 50 Million:
Please help us in our mission by getting involved and/or donate to AARDA. I live with Lupus and never stop hoping for a cure; furthermore, wising for ability to live life free of medications. At least, with or without medications that will create the ability to enjoy the great outdoors in the world we live in...IMAGINE THAT! I DO!" -Lorna
"I am Carol Berger and I am 1 in 50 million
I am one of the 50 million Americans who live with autoimmune diseases, not just one disease, but several. My life and my family's is affected on a daily basis. You see, my teenage daughter lives with my conditions by watching me struggle with simple everyday tasks such as having the energy to go to work every day, to open a jar in the kitchen while trying to make dinner or simply to take a walk. Participating not only in regular routine activities that people take for granted, but to have the energy to go to a family event or take her for a driving lesson has taken its toll on us. My older brother and sisters have supported me as I endure various treatments such as Remicade and now Lyrica and the side effects that add to my daily symptoms.
I tell you my story not to expect sympathy, but to encourage you to support the efforts of the American Autoimmune Related Diseases Association (AARDA) in research funding, awareness and education. It's important for them not only to help those with my conditions, but their families, friends, co-workers and especially the general public to understand the seriousness of these conditions and just because we don't look sick, doesn't mean we aren't sick. Education is key to managing these conditions and organizations such as AARDA are imperative to our survival." - Carol
"I have been diagnosed with Sjogren's Syndrome & Lupus and my sister has a terrible case of Multiple Sclerosis. Another sister has had strange autoimmune illnesses also. Our grandmother had Parkinson's and we have cousins with Crohn's disease, Colitis and other undetermined autoimmune disease. Together we are 6 of the many people affected by autoimmune disease. I meet more and more people - at high school reunions, through work and through social activities, who are suffering with autoimmune diseases. I have found improvements through diet changes and vitamin D. I am convinced the source has something to do with the food we eat and possibly the water we drink. Drug companies will not fund this research so we must find other sources. When will it end? Let's make our voices heard!!! Thanks for your help in this effort. " -Cheryl
Since being on Chemo and other Immunosuppressive drugs she can't be around germs. A simple cold can kill her. We just fought bacterial pneumonia this past week. It is scary to think that when she is sick that they don't want to put her in the hospital due to even more germs there. We are fighting infection after cold after infection. This is why we need your help!"
This is Victoria's story - collectively my family is 8 in 50 million.
Victoria Grace Baumman, born January 11, 2001. We couldn't have chosen a better name for her. Her life was victorious in many ways, and she lived it with such grace and beauty that takes more than just 9 years to achieve.
She was born healthy. Beautiful, 10 fingers, 10 toes and all her organs in the right place. We took her home with the greatest joy. She brought happiness and light to places in our hearts that had seen darkness for many years. Everyone was waiting for her arrival with much anticipation and love. When Victoria turned 11 months old, we were given the devastating news that she had Type 1 Juvenile Diabetes. In Victoria's case this was considered to be an autoimmune disease as opposed to a specific genetic disorder. It took us a few months to get our heads around that diagnosis. Our blessing at the time was that she was just a baby, and she would adapt to a controlled life of a diabetic regimen. We found wonderful doctors and nurses that helped us with learning all we needed to know. Victoria was a happy baby, and toddler and started pre-school at 3 years of age. In the summer of 2008, we found out that she had lymphocytic colitis. Another autoimmune disease of the colon. Usually diagnosed in the elderly. With diet modifications (unfortunately some of her favorite foods) we were able to control without medications. In April of 2009, 3 weeks before her First Communion, Victoria had her first Gran Mal seizure. After which life as we knew it was never the same. She had two more seizures throughout that year that always rendered her in critical condition in the PICU for 10 days or more. There were many more other complications that went along with this new issue. Side effects of the anti seizure medications, generalized muscle weakness, fatigue, irritability, depression, muscle pain. Through it all, she still tried to find her "happiness". She never really understood that she was so sick. She jumped every hurdle put in front of her. In December 2009, things really took a change and after a 6 week hospitalization on Long Island, and a 2 week hospitalization in Philadelphia, we discovered that Victoria had a neurological disease called "ADEM" or "ADEM-Like" We also learned through a lung biopsy that she had some type of Interstitial Lung Disease, and Muscle Biopsy showed some type of necrosis. Another issue that was related to her long term use of prednisone was also identified as "Hypotrophic Cardiomyopathy and Pulmonary Hypertension" All autoimmune related . There was no "unifying" diagnosis. They treated her with 2 courses of heavy duty "Pulse Steroids" Eventually, she regained maybe 30% of her strength back. Mentally, she recovered. Thank God. It was heartbreaking to see her so weak and debilitated. She worked so hard in physical therapy and home schooling so that she could finish out her 3rd year of elementary school. In the beginning of June 2010, she was not feeling well at all and asked to be taken to the hospital. Good thing I listened to her. She was diagnosed with Myasthenia Gravis. A very rare neuromuscular disorder. It did seem to explain a lot of her symptoms. We were grateful to finally have a definitive diagnosis. She started IV/IG therapy immediately. We were discharged, with a plan and a treatment. Two weeks later, she got worse. On July 16th 2010, Victoria was rushed to the hospital in acute pulmonary distress. The same day she had 2 seizures and needed to be intubated and placed on a ventilator to maintain an adequate airway. We were transferred to a NYC hospital where we spent 45 days in the PICU. Her body was being attacked and they could not make her better. We started with 5 days of Plasmapheresis. After an additional week, there was no neurological improvement. Every treatment had a risk, but it always outweighed the benefit. It was a game of Russian roulette. Her Lungs were failing. A chest tube needed to be placed to pull the chylous fluid from her lungs. Her heart was getting sicker. Her pulmonary hypertension was elevated causing her heart to become more enlarged and stressing the arteries. Her kidneys began to fail. It was impossible to maintain "Homeostasis". Her blood pressures were dangerously high and she required continuous arterial blood pressure monitoring. Her brain showed encephalitis on MRI of an unknown type. CSF was clear of any bacteria or virus. Then her immune system started to attack her bone marrow causing low platelet counts. There was a consumptive process they could not identify. In the last week she needed to go on dialysis. It was absolutely frustrating for all the doctors and specialists who saw her. After day 40 in the PICU, one of the doctors met one on one with me and said "I am afraid for your daughter's life". I was devastated. I am still devastated. To not know what caused my daughter to suffer and lose her life has been the ultimate sacrifice. Victoria lost her fight on August 30th 2010. Now let me tell you about the way Victoria lived. I knew 3 days after she came home that I would not have her for long. Don't ask me why, I just knew. She must have known too because there wasn't a day that passed that she didn't fill someone's heart with joy. Turn someone's frown into a smile. Make you sing a silly song all day long. She had a natural voice and loved children's worship music. If the words "baby Jesus" were in the song, you know she had it memorized. She had an amazing ability to connect with everyone and anyone, be them friend, family or stranger. You could not help but notice her. Her very presence begged for you to say "Lord Merciful, thank you for this beautiful gift". At the same time she was humble, graceful, and never had a negative word for anyone. I know, you are thinking , this lady is nuts. It is not possible. She was as perfect as I have described her. I will dare anyone to find someone to contradict me. She was a true gift. Unfortunately, she had to be returned. I hope and pray our paths will cross again. Another child perhaps. I can say for certain that He does live among us. And He has shown me His face through Victoria's big beautiful brown eyes. Thank you everyone for letting me share her with you. May you have peace in your heart and blessings in your future, Support Autoimmune Disease Research, Awareness, and Education this March! Raise Your Hand for Autoimmune Disease!
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"We are a Wisconsin Family that has three of us with currently living with Lupus. Myself Lorna, my niece, and my cousin all have different variations of Lupus. My cousin and I are within two years of each other, but my niece is only 23. I wonder how many more of us will be part of the 50 million living with an autoimmune disease. How would it feel to be fighting for your life and told it is all in your head. We must learn to treat the patient and not the disease itself. Each person suffering from chronic autoimmune diseases is unique and with own entity. NO TWO ARE EXACTLY ALIKE...I can only pray that we find a cure for all these diseases and do not put them on the shelf no more...no turning our backs! We must march forward with fortitude demanding knowledge through research till we find the cause and cure...IMAGINE LIFE WITHOUT AUTOIMMUNE...LIFE FREE OF ATTACKING ONESELF...I can, why can't you? 
"Her name is Isabella. Izzy, as we call her and she is one is 50 million. Izzy has Severe Juvenile Idiopathic Arthritis. I know, it sounds crazy that a child who is 4 years old can have arthritis. It is not like an older persons arthritis. Her body is attacking itself all the time. Her body attacks her joints, her heart, her lungs, her eyes, and her spinal nerves. The Arthritis is all ready in most of her joints from head to toe. She receives injections in her jaw just to keep it moving and her able to eat and talk. She receives IV infusion every two weeks of a medication. She gets weekly injections at home of a chemo drug.
Plus 14 other medications and breathing treatments daily just to keep her looking like a normal kid! You may see her running at times (good days) and other days she can't get out of bed or off the toilet by herself. 
"At age 15, our daughter very nearly died before emergency-room doctors finally figured out that she had autoimmune hepatitis. Her liver was in 98 percent failure: the staff told her she had ‘the blood work of a dead person.' Until a few months earlier, she'd been perfectly healthy, as are we, and as were our two sets of parents. But my uncle had ankylosing spondylitis, and my husband's grandmother had lupus. A half-dozen visits to our top-ranked HMO for a variety of seemingly unlinked, but serious symptoms failed to set off appropriate alarms. Look far enough into any family tree, and you're likely to find a frightening number of risk factors. Autoimmune diseases affect us all, and funding is desperately needed for more rigorous research. A 15-year-old shouldn't end up nearly dead -- and sentenced to a lifelong regime of immunosuppressants -- as a result of medical ignorance and governmental apathy." - Sandy
