Yesterday a man wrote to the KDA and asked if we knew of any link between Kennedy's Disease (SBMA) and Osteoporosis. That question has been asked by several men with KD.
As far as I can determine, there has been no research connecting the two. However, I have Osteoporosis and I know of at least four other men with KD that also have it.
The dangers of Osteoporosis and KD are evident. A fall can become a broken leg, arm or hip, for example.
About eight years ago a fall of mine resulted in a broken tibia and fibula. Those were probably the most difficult three months of my life. Not being able to place any weight on my left leg made my life. and the life of my wife, extremely difficult. We survived the daily ordeal, but it was the reason I began using a wheelchair. The surgeon said the bones in my lower legs were so porous that another serious fall could result in me never being able to use the leg again.
If you have KD or are a carrier, have you been diagnosed with Osteoporosis?
Has your doctor recommended a course of action to help with your condition? If so, what was it and did it work?
I look forward to hearing from you.
My husband has severe Osteoporosis, found out right before the KD diagnosis as he feel and broke his hip in his 40's!
He has had to take an RX of vitamin D in the past year twice, I think it was 5,000 mgs. He is vitamin D deficient so the calcium won't hold if you don't have enough vit. D.
He fell and broke his wrist severely in 2012 but took lots of calcium & vitamin D and was out of a cast in 3 weeks. Dr was very surprised to see how fast he healed and had thought he was going to need pins.
So, hearing other have Osteoporosis, I have to wonder if there is a link?
This was published in 2001,FRACTURE RISK IN PATIENTS WITH MUSCULAR DYSTROPHY AND
SPINAL MUSCULAR ATROPHY,(Journal Rehabil Med 2001; 33: 150–155). While it doesn't mention KD specifically (few studies do), it does cover many of the conditions we find ourselves in. It makes a good read for caregivers and KDers alike.
Note: The link to the PDF report is: Fracture Risk ReportThis message has been edited. Last edited by: Bruce,
Location: San Luis Obispo CA
I too have osteoporosis. I have had two broken legs, one about eight years ago and one about five years ago. Both breaks due to my knees giving out and my falling on the back of my leg with the break down low. Both times I needed "assisted living" support while healing.
I've had two OP tests using the heal/sonic screening test. First test was about two years ago and I was well into the "you have osteoporosis" range. The person doing the screening test suggested New Chapter Bone Strength as a calcium supplement - worked great! After the first year my OP number was halved and more into the "danger of" range. While there could be margins of error the exaggerated how well the supplement worked I'm hoping it really has had a positive affect. I'll be coming up on my third test in the spring and I hope it confirms the improvement.
Recent research has indicated that taking calcium supplements towards the end of the day is suggested. I take one cap at lunch and two after supper.
email:rheitzman at gmail
I'm 65 and have had KD symptoms for about 12 years. My doctor indicated osteoporosis about two years ago. Since then I've fallen and broken a shoulder, then a hip and most recently 3 metatarsal bones in my foot. The first two healed well, the foot is in the 5th month of recovery and still swells at night and feels like it is stuffed with cardboard in the day. I started the drug Forteo to build bone density about two months ago. Seems to be working. Has anyone had similar issue with bone healing?
Mark, thanks for sharing. I have had several broken bones as a result of falls. Fortunately, they have all healed quickly. I have osteoporosis and I take a calcium supplement. I hope this works for you. Keep us advised.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614