University of Colorado could not Diagnose Scleroderma in 4 years



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	SCLERODERMA Misdiagnosis at University of Denver G00gle Health Search University of Colorado could not Diagnose Scleroderma in 4 years Four years later Mayo clinic diagnosis Girl with Scleroderma but too late for her heart for which she gets a transplant on valentines day ROCHESTER, MN -- Janae McCormick is 14-years-old and still a teenager. Four years ago McCormick began developing marks on her hand. That's when her parents took her to the University of Colorado, where the family is originally from. "After many biopsies and blood work and everything and 4 years, they still weren't able to determine what it was that Janae had," said Phyl McCormick, Janae's mother. The McCormick's then asked for a referral to the Mayo Clinic. After 3 days Janae was diagnosed with systemic scleroderma, which is the hardening of the skin and connective tissues, externally and internally. "This is an adult disease so that was why it was very difficult to diagnose on her because they have not known that many children would even have this disease," said Phyl McCormick. "In fact she's the youngest person to have it so far," added David McCormick, Janae's father. The Mayo Clinic is just one of two places in the country to have a light box that could treat Janae's disease. The McCormick's decided to come to Rochester and left their home in Colorado and moved here to help their daughter. After a lot of treatment, doctor visits, and therapy, the McCormick's found out that Janae's disease had reached her heart. "Her heart was not able to pump the blood into her lungs. So, which in turn, made her heart enlarged 2 to 3 times it's own size. Then we're told that Janae would have to have a heart transplant," said Phyl McCormick. That heart came as the ultimate Valentine's Day gift. A new heart to replace the old heart. The McCormick's, despite their hardships, are thankful for their gift. "If it wasn't for the decision of the family to make this decision of donating the heart. Janae possibly wouldn't have had a heart yet or maybe even later, being the rarity of the size of the heart that she needed. We just want to say thank you." Causes Make sure you do not have celiac disease Your nervous system is made up of two parts. The core is your central nervous system — your brain and spinal cord. The rest of your nervous system, branching off from your spinal cord to the rest of your body, is your peripheral nervous system. Part of the peripheral nervous system involves nerves that you consciously control — such as nerves you use to move your voluntary muscles. Part is your autonomous nervous system — the nerves that regulate the part of your nervous system that you can't control, such as your heart rate, blood pressure and digestion. Damage to your peripheral nerves is called peripheral neuropathy. Autonomic neuropathy is a type of peripheral neuropathy in which the very small nerves are damaged. A number of conditions can lead to damage of the autonomic nerves. The most common cause is diabetes. About half of the people who have diabetes eventually develop some type of neuropathy. Other causes may include: Alcoholism, a chronic, progressive disease that can lead to nerve damage Poor diet White rice, white flour, white sugar no fatty acids in diet. Infection from virus, mycoplasma type bacteria. Abnormal protein buildup in organs (amyloidosis), which affects the organs and the nervous system Autoimmune diseases, in which your immune system attacks and damages parts of your body, including your nerves Some tumors, which can press on nerves and cause direct or remote damage (paraneoplastic syndrome) Multiple system atrophy, a degenerative disorder that destroys the nervous system Surgical or traumatic injury to nerves, injury can be from a car accident. Other chronic illnesses such as Parkinson's disease and HIV/AIDS Celiac disease more info Risk factor Having diabetes puts you at high risk of developing nerve damage, including autonomic neuropathy. The longer you have diabetes, the higher your risk. Risk is highest for people who've had the disease for more than 25 years, who are older than 40 and who have difficulty controlling their blood sugar. Researchers currently think diabetes is a autoimmune disorder. In fact, the higher the blood sugar, the greater chance you have of nerve damage. Controlling blood sugar — keeping it as close to the normal range as possible — decreases the risk of developing nerve damage or helps keep it from progressing. When to seek medical advice If you have diabetes, a compromised immune system or other chronic medical condition, see your doctor regularly. Seek medical care promptly if you begin experiencing any of the signs and symptoms of autonomic neuropathy. If your doctor does not prescribe IVIg or tells you there is no treatment please contact us, we can help you even if your insurance denies IVIg. Please continue to page-2 of small fiber Neuropathy CIDPUSA
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