Place Dercum's Disease Syndrome (AKA: DD & AD; Adiposis Dolorosa) on the SSD Compassionate Allowances List of Diseases
This petition had 4,168 supporters
A disease is defined as “RARE” in the U.S when it affects fewer than 200,000 Americans. Dercum’s Disease (DD), aka Adiposis dolorosa, is an extremely rare and very painful orphan disease. It is debilitating, devastating, and disabling! The face you see with this petition is that of my 10 year old; it is the face of not only a broken heart, but the devastation of what happens to her and other children who have a parent with this disease. It is the very face that I look at every day and pray to GOD that the illnesses and symptoms she is experiencing are not the beginning of her developing DD or a similar disease. NORD and the NIH have verified the extent and complications we experience as patients on a daily basis and it has been agreed upon that it is a syndrome. It is in the “TOP 10 of rare and most painful diseases known to mankind” and for many of us we go “hour to hour” not “day to day”. DD can cause obesity very quickly despite exercise and diet. Unfortunately for those of us who have DD, there is not enough accurate information and research available in the medical community or the Social Security Disability Judicial system to help us. We can have our tumors cut out, but in 50% of cases, they grow back and sometimes multiply. DD is an ORPHAN DISEASE and it has no parent, so no facet of the medical community claims it. 99.5 % of Dr.’s have never heard of it and many times we are treated like we are crazy or criminals because we seek help for our pain. Most traditional medications don’t work for us because we don’t fit inside the “box” that has been designed for regular patients. We are discriminated against, mislabeled, misjudged, and misdiagnosed by the time we get the correct diagnosis. We are then informed that “we are the footnote at the bottom of a medical textbook”!
Place Dercum's Disease (AKA : DD & Adiposis Dolorosa) on the SSD Compassionate Allowances List of Diseases.
· DD is an extremely progressive, degenerative, debilitating, and infiltrative disease that is systemic. There is no cure and it’s unknown if it’s genetic. It affects women 5-30 times more than men.
· There are 3-4 different types of DD and a patient can have more than 1 type and more than one disease. There is only 1 specialist in the United States who actively treats Rare Adipose Tissue Disorders- Dr. Karen Herbst (lipomadoc.org) who is currently at The University of Arizona Medical Center.
· People with DD develop painful lipomas and angiolipomas all over their bodies. It is thought that the tumors put pressure on and wrap around nerves, include connective tissues, form in or around joints and is an auto-immune disease. There are some of us who even have them in our head and it is agonizing!
· DD is "like" a fatty tissue rheumatism and parts of your body can swell for no reason. As the disease progresses, you are unable to work b/c of the pain and complications. You can have low grade fevers that come and go. You can feel like you are being stabbed, bitten, and have a crawling or burning sensation all over your body.
· Any and all layers of fat throughout your body are eventually affected and tumors can grow in lungs and right out of the tissue in any organ. DD is a dysfunction of your lymphatic and vascular systems.
· There are many other symptoms and complications that have been experienced and impair our ability to work. Many of us have a variety of different issues and struggle to get accurate medical treatment for them even though they cause more pain. Some of them include, but are not limited to: Edema, Lymphedema, Lipedema, Lipoedema, Sleep Disorders, Fatigue, Vitamin Deficiencies, Tachycardia, Shortness Of Breath, Diabetes, Fibromyalgia, Thyroid Disease, Bone Pain, Congestive Heart Failure, myofascial pain syndrome, Connective Tissue Disorders, Blood Pressure issues, Arthritis, Seizures, Nervous System Dysfunction, Vascular Impairment, Bleeding or Clotting Disorders, Anxiety, Cardiovascular Disease, Vision And Hearing Disturbances, Migraines, Neuralgia, Extreme Joint Pain, Mast Cell Disorders, Memory Impairment, Brain Fog, Neuropathy; the list goes on and on.
Quality of life is poor without a proper treatment plan. We can’t even get an accurate treatment plan unless we are fortunate enough to see Dr. Herbst. When an outbreak occurs, new tumors can develop daily. Outbreaks are brought on by illness, stress, and sometimes just because your body is constantly attacking itself.
· Medication and durable medical equipment costs cause most of us to suffer more because we can’t afford them. We NEED our disease to be placed on the “compassionate Allowances List” of disease so that we can start getting the help we need.
· DD CAUSES DEPRESSION IN MOST OF US. We don’t want to continue to live in constant pain and have no resources available to help us live to the best of our ability. I am tired of fighting for recognition, financial stability, and constantly having to prove my disease and pain ARE REAL. Most of us have lost ourselves and everything we worked so hard for: cars, homes, careers, income, dreams, friends and families.
When the time comes that we can no longer walk, use our hands and arms, do regular household tasks, let alone continue to hold down our jobs, we get turned down by the SSD administration because they have never heard of our disease. They don’t understand the pain, dysfunction or disfigurement that accompanies it. We then become doubly discriminated against for that reason alone. Once your initial SSD claim has been denied and you file an appeal, in many states, you have to wait and be unable, and out of work for at least 1+ full year before you can even get on a waiting list for an appointment with a SSD judge!
I can tell you from experience that we lose everything in that waiting time frame and become destitute and poverty ridden because you can’t support yourself or family. You also lose your medical benefits and have no income because you can barely walk let alone work. Just imagine having this horrid disease and then being told that you can’t collect SSD because a judge has never heard of it. Many of us will end up fighting the system for years and get worse and worse in the process.
Please help us get DD on “the compassionate allowances disease list” for SSD and SSDI. According to The National Disability Institute 1 in 3 disabled individuals live in poverty. We are so few in number because of the rarity of the disease that we don’t pose a threat SSD reserve and we have paid into it our entire working lives. I started this petition because I have just turned 40 and have had this disease for 7 ½ years. I was stricken with it the day after my son was born and it took me over 3 years to get a diagnosis. Within this last year I have become progressively worse to the point that I can no longer work or take care of my kids, home, or self. How can i fight and protect my kids when i can't even take care of myself by getting the proper treatment i need and deserve?
I have lost everything and am not going to get any better. I was never really sick a day in my adult life before this disease struck me and I wouldn’t wish this on anyone! I am asking you to please help and make a difference by fighting for those who can no longer fight for themselves. By signing my petition you will be helping us in our battle to get our disease recognized as the compassionate disease that it is. This is the first step that will enable us to help educate professionals and get the research funding that we so desperately need. If we could focus on fact and research instead of fighting a system that’s designed to keep us down and sick, we could make much needed medical advancements, not only in our disease, but others as well.
Statistically, there are more than 7000 rare diseases and combined they make up more than 1/3 of all illnesses.However, they are poorly researched because there is no monetary gain for drug companies. While I may be a statistic, I refuse to be just another number and this is the only way I can fight back. This is about about our children now and trying to prevent them from developing a disease that is the equivalent to a long suffering death sentence. Please help me and others with my disease by signing my petition. Thank you.
Today: christine is counting on you
christine mcgrath needs your help with “•Office of Social Security Disability Administration -Federal Government of the United States: Place Dercum's Disease Syndrome (AKA: DD & AD; Adiposis Dolorosa) on the SSD/ SSDI Compassionate Allowance List of Diseases”. Join christine and 4,167 supporters today.