Dear friends and family, As many of you know, I was diagnosed with a very rare disease in 2012 called Rosai-Dorfman and went through many months of chemotherapy that destroyed my immune system. Later, doctors changed their diagnosis to Erdheim-Chester, and at that time, I took a long break from any further treatments due to my low immunity. I also wanted to get another biopsy with a more accurate diagnosis. This past July, I saw doctors at Sloan-Kettering in New York and they performed a biopsy of my tibia. That biopsy also favored Erdheim-Chester. This disease is a very rare condition in which healthy cells unaccountably start multiplying. It behaves like cancer and there is no cure. If left unchecked, it can cause pain, kidney disease, heart issues, breathing difficulties, balance problems, speech issues, blindness and inevitably death. I had never heard of the disease before I was diagnosed and the saddest part is that most doctors had not either. Many patients go through years of misdiagnosis. The disease is primarily causing lesions in my orbits that affect my eyesight. Steroids seem to help but as soon as they’re stopped, the vision worsens. At this time, I’m going through another round of steroids. I also have the disease in my long bones - legs and arms, skull, pelvis, spine, and left kidney. I have been stable since being diagnosed, but the doctors have recently placed me on Kineret (Anakinra) that is used for rheumatoid arthritis. It has helped with pain and fevers. Soon I will have an MRI to determine if these daily injections are helping the lesions throughout my skull and orbits. So that’s been my new life but I keep a positive attitude except for the few times that I break down. It’s a diagnosis that has changed my life forever. I thank God for allowing me to have been present and fully active at my son’s wedding. You have no idea how long it took me to find a dress since I never felt well enough to go shopping. I no longer drive so Tom is my own private chauffeur! (It’s not all bad!) I continue to ask for your prayers not only for me, but also for others who suffer from these orphan diseases. I normally wouldn’t do this, but I know that around the holidays people donate to their favorite charities. I know Tom and I do. If you are considering donating to a cause, please consider The Erdheim-Chester Disease Global Alliance. It was founded by spouses and parents of ECD patients. This organization supports and lobbies for research on ECD. It also supports and educates ECD patients and families. It provides a weekly chat room where I have met so many wonderful people with this disease and have gained so much information. Not only do we share medical information but also our pain and triumphs. It lets us know that we are not alone. I just met the nicest man with a most beautiful family. Their 35-year daughter went blind from this disease and also has the disease in her heart and other parts of her body. Her dad told me this past Saturday that she is now in remission. What a blessing! Until now, this organization has survived on the generosity of a few supporters that cannot sustain it into the future. I am therefore participating in an appeal for contributions. Any amount in my honor would be so appreciated. Donations can be mailed to ECD Global Alliance, PO Box 775, DeRidder, LA 70634 or online at razoo/story/Ecd-Global-Alliance. The ECD Global Alliance is a non-profit 501(c)(3) organization. Thank you so much for always being here for me, praying or complimenting my photographs. It means a lot. God bless and may He always keep you and yours in His care.
Posted on: Fri, 21 Nov 2014 23:54:34 +0000
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