| Hi, I am mom to 3 year old Brianna. I wrote a web page before this, that you will see a link to in the left hand corner that reads, "See our Story when we thought Brianna had JRA". The story talks about how we found out that our baby had Polyarticular Juvenile Arthritis (JRA) at only 10 months old, and was probably born with it. We recently found out that Brianna never had JRA at all but instead has a disease called Sarcoidosis. The doctors finally found something different in her blood tests in May,2003 that had to do with her kidneys. We were then sent to the Eye Specialist and Kidney Specialist where they both found problems. The Eye specialist and the Kidney specialist both thought Brianna had Sarcoidosis. The Eye Doctor Diagnosed Brianna with Granulomatous Uveitis and the Kidney doctor said that Brianna had some kind of kidney disease. There were hardly any details given to us. Brianna is on 2 Enbrel Injections a week, 1 1/2 tsp. Prednisone a day, prednisolone eye drops and she was getting 1 shot of Methotrexate a week until 2 weeks ago, they found that her white blood cell count was very low and has barely improved and she cannot take the Methotrexate until that gets better. If you have a child with Sarcoidosis or know someone with a child with Sarcoidosis Please E-mail me, I would love to learn more about this disease and become friends. |
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| November 29,2003 |
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| Sarcoidosis is a disease for which the cause and cure are not known. Inflamed tissue forms, and attacks any body system or organ. Permanent damage is caused to the affected organs. The prevalence of the disease is approximately 800/100,000. Sarcoidosis is most often treated with the steroid, prednisone for which there are numerous adverse side effects. Sarcoidosis affects each patient differently. Lucky patients experience minimal symptoms with little change to their lifestyles. Thousands of others are totally debilitated by the disease; it has been fatal to many. What Is It? Sarcoidosis (SAR-coy-DOH-sis) is an inflammatory disease characterized by granulomas (small rounded outgrowths made up of blood vessels, cells and connective tissues) that can produce many different symptoms. It is generally a chronic disease, lasting for several years or a lifetime. Some people, however, may have a type that only lasts a few months. What Are the Symptoms? Some people may have no symptoms; others may have symptoms that include: Skin problems Lung problems Eye problems Arthritis Myositis Fever Fatigue Weight loss What Causes It? Although the cause is unknown, suspected causes include: Viral/bacterial infection A defect in body immune system An unidentified toxic substance An unknown environmental cause An inherited or genetic factor How Is It Diagnosed? During a physical exam, physicians check for: Enlarged, tender lymph glands. Dry cough Erythema Nodosum (redness of the skin) Eye problems Tests include: Biopsies of skin lesions, lymph nodes or lungs Chest X-ray Blood tests Treatment Options Physical therapy Medications: glucocorticoids, NSAIDs/salicylates, colchicine, hydroxychloroquine. Methotrexate, azathioprine and cyclosporine are being tested Who Is At Risk? Sarcoidosis is most common in young adults between the ages of 20 and 40. It affects more women than men, and occurs more often in African-Americans. |