Dear friends. As many of you already know, I am quite ill with a progressive neuro-degenerative disease called Superficial Siderosis. It is such an orphan disease that NORD doesnt even have info on it. There are far less than 200 of us worldwide. I am getting worse. I am now getting my first pair of hearing aids. It robs you of your hearing. It robs you of taste and smell. You lose feeling in your extremities and it causes tremors in your hands. Not a great thing for this artist and photographer. Making jewelry is rapidly becoming a thing of my past. It is robbing me of the very thing I live for. It robs you of your balance and steady gait. I need a cane now. I trip. I fall. I break bones. I smashed my nose into little pieces last year because my left side and hand were too weak to hold me back from planting my face on the floor. I regularly end up in the ER with headaches that are so bad my skin hurts. After IV meds, I can go home after a few hours. Until the next bout. It diminished all feeling and muscle control in my bladder and bowel. I now have a housekeeper to do the things I used to do including cooking. She also watches me like a hawk. I am bleeding in my spine. The location hasnt been pinned down exactly. Probably caused by one of the several invasive procedures. It leaves iron salts behind after the blood cells die off. Through a complex process it ends up a frothy substance that coats neurons and kills them. It affects my eyesight as well. In my case the majority of iron deposits, shown up as dark spots of hypointensity on MRIs, is mainly on the right side of my brain, brain stem and sporadically on my spine. Eventually I will end up in a wheelchair, suffer seizures and possible strokes. Dementia and death follow. All this within 20 years from now - without treatment, similar to ALS. I went to see Dr. Gerber at the ALS clinic - built by proceeds of over $2.5 million raised from the Midsummers Night Ball, thanks to students from Northport High School. Not only was he rude beyond belief, making me cry which further disgusted him, he sent me on my way after telling me to do my own research to find someone who is doing research on SS. ME! He was a condescending blow-hard. He knew nothing about help, treatment, etc. for SS nor did he even want to which was the same song I received from every neuro on Long Island and NYC. So I set out to find a specialist. After finding drs in Europe and Tokyo, I finally found 2 in this country. One at the Mayo Clinic (who isnt convinced that medication will help) and Johns Hopkins. At JH, I found out about a clinical trial of an experimental drug that essentially rids the body of excess iron. Its the only drug that crosses the blood brain barrier. I chose to see him. He put me through a battery of tests, physical and cognitive. Its affecting my short term memory and vocab recall. Again, not good for a wordsmith whos written 2 books. Who auditioned for Who Wants to be a Millionaire. I passed the test and interview. I was on the list to be called. (Never got there because I missed the damn call!). After I found out that my new doctor ran out if funding and had to pay the difference out of his pocket, I realized that we need to raise funds. He has me on this experimental medication. It costs. $50,000.00 a year! Thats a mortgage payment for many. I am lucky. My insurance pays for it. But there are other people who arent covered. That means a certain horrific death sentence. They found a Canadian pharmacy that will send it for about $400-$500 a month. While on the medication I must eat foods very very low in iron. 5 days a week. On the weekends I stop the meds and eat red iron rich meat and veggies. It kills off my neutrophils leaving me immunocompromised. It also causes a problem that could potentially kill me so I go for weekly blood tests. It is difficult to write this for two reasons. My eyesight is causing problems. Sometimes double vision, sometimes a wobbling eye. Oftentimes burning blurry eyes. When you see me Ill be walking with my constant companion - my cane which keeps me from veering off course and wobbling, losing my balance and stumbling. I may not hear you call me or say hi. I dont hear my phone ring either. The loss of hearing makes it difficult to participate in conversation and come off as diffident or air-headed. So this brings me to a huge and VERY IMPORTANT plea: I need to form a non-profit and try to fundraise to help my doctor at Johns Hopkins fund his life saving research. Can anyone help me ? Any ideas? Offers to guide me and/or help me. Hold my hand. Push me to go forward? I suffer from severe joint pain and extreme fatigue. I need help. Ive never asked for help before. Ive always been an I can do it myself person. But Ive had to come to the stark realization that I need help. I acquiesce. Currently, I am in bed with my neck (brain stem) and skull laying on a heating pad. Im on Percocet and Valium trying to stave off a headache that could potentially land me back in the ER - I was there 2 weeks ago for a headache that had lasted 3 solid days and rendered me a whimpering, curled up bundle of useless agony. All from the iron deposition in my brain stem and right brain hemisphere. That is the biggest blockade to effective fundraising on my part. And so, I need guidance and help. I am begging for help. Not just for myself but also the people who need to pay for this astronomically expensive medication, canes, wheelchairs, hearing aids, household help, transportation to doctor visits. There are about 20 here in the US. The others are in the UK, Australia, Brazil, Mexico and New Zealand. They benefit from socialized medicine except our Aussie friends. Australia hasnt approved the medication for them yet - which means a certain death sentence in as little as 2 decades. There are foundations and huge fundraisers for breast and other cancers, heart disease, Lupus, MS, ALS, and MD. But nothing for us - who fall between progressive Multiple Sclerosis and ALS. Its not a pretty disease. Its insidious and robs you of your freedom, passions, friendships, love life, brain and then, ultimately your life. Please - if you know me and care about me and, by association, others with SS, can you find it in your hearts to help? With love and all my appreciation ----
Posted on: Fri, 04 Apr 2014 18:30:52 +0000
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