Name : Alice Albin
Adult: 46 years old
City, state: Lansing, Michigan
Areas of Body Affected: Left arm and shoulder (melorheostosis and osteopoikilosis)
Personal History :
Oh, where to start??? I am 46, have melorheostosis and osteopoikilosis. There was a paper written about me and my brother and sisters by Butkus and Cooney in about 1997. My parents do not have either disorder. My brother and two sisters all have osteopoikilosis. I have both conditions. My birth defect is in my left arm and shoulder. It was not even noticed that anything was wrong with me until I was 6 months old. My grandpa kept telling my mom that my hand wasn't right. The length of my upper arms are the same, but my left forearm is shorter than the right. My hand looks ok, except I have what they call a hypo-plastic thumb (it looks more like a big toe). I cannot rotate my wrist upwards, and I cannot fluctuate my hand higher than being level with my forearm. I also have contractures--at the elbow (this makes it so I cannot extend my arm out straight), and on the under-side of my wrist (my wrist pulls down). Aside from all that I have had 5 childhood surgeries and, I think, 6 adult surgeries due to complications with carpel tunnel syndrome. Aside from my birth defect and my surgeries, I am perfectly normal and have led a perfectly normal life. I have 3 children--none of whom have either condition. I am married, I have worked at Michigan State Univ. for the past 28 years. Everything is normal. I used to golf, but I haven't tried that since the last couple of surgeries. I probably can, but just haven't. I do all kinds of crafts--knitting, crocheting, crewel, embroidery--you name it. I help my husband on the farm--bailing and stacking hay, feeding the cows, shoveling manure. I enjoy these things, but they also give me strength. Unbelievably, I am quite strong even in my left arm. I just can't twist around like most can. I think you get the picture. This disability has not limited me in the least. In fact, I believe it has helped me become 'more' because I've had to overcome difficulties that others do not even face.
Comments and Suggestions: Now, what should I tell you? My childhood was hard. Times were different then, but based on how my children are, I guess the kids haven't changed much. Be very careful about limiting your child's activities. It is very important that you encourage him or her to do everything that they are interested in. Fortunately, I had a good childhood doctor. Once I got to be about 12, he told me and my parents that I either had to learn how to play the piano or type. I chose typing. That was what I started out doing when I got out of high school. Now I'm a senior level admin. asst. I still type, but not as much. In reality, I couldn't type like I used to because of my condition. (My arm bothers me if I type a lot.) Anyways, let your child choose his/her limitations. Let him/her explore how they can do something that you may think they shouldn't. Believe me, if they can't do it or if it hurts, they will quit on their own. If at all possible, encourage your children to do things by themselves and to improvise. You be the judge of how your child is holding up in his/her activity--do not rely on the doctor to make this decision in its entirety. You are the parent. You know your child the best. Ultimately, I think as parents, we know what is best and can make the best decision...
The other thing I want to say is, by all means, do whatever you have to to get the best medical help. The best place to go is Mayo for a difficult surgery. Dr. Cooney or Dr. Katarinac (or however you say her name) are top notch--the best. Do not let someone do surgery that has no experience with this condition. Trust me, you will have problems later. Trusting the wrong surgeon cost me at least 3 adult surgeries--extensive, difficult surgeries. I won't go into all of that here, but please do get the very best help. Be aggressive, challenge your insurance company if they won't allow it. After all, why do you have insurance? Answer: You have insurance to cover situations like this. Of course, they don't want to pay. It is their obligation, however, to do so. (enough said!)
Also, check into state or government funding--maybe your child would be eligible for SSI through social security. The bottom line is: Do whatever you have to in order to get the best care. You simply cannot afford to mess around with well-meaning, but unknowledgeable doctors in relation to this condition. There is a Dr. Jeffrey King who I now go to at the Univ. of Michigan. He was with Dr. Cooney at Mayo for awhile, and he has written papers about this condition, and has a personal research interest in this condition. He is a really good doctor. (Dr. Cooney even told me so!) I think I've probably gone on long enough.
If anyone has questions for me, please feel free. I will help you and your child in any way I can. Good luck. I close by sending you all my warmest regards...
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