tuistone 
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About Me
tuistone
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About Me
64 year old male, semi retired, disabled.
64 year old male, semi retired, disabled.
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Recent Activity
November 13
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tuistone wrote a discussion post in the Hemochromatosis support group: Bloodbanks 3:18am
Just wondering if those of us from different states have bloodbanks that accept blood from HH folks?…
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Journal
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Hugbook
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Support Groups
Close Hemochromatosis
Suffered joint problems for 15 years before diagnosis for HH in 1993. Followed by 15 months of aggressive bleeding and now 4-5 bleeds annually. Most major joints have sustained much damage. Both hips replaced; pain management is what my life is about. Shoulders, knees, ankles, hands and lower back are arthritic. Started colchicine in 2006 and it has given me a new lease on life.
Treatments
- Phlebotomy Working / Worked
- Phlebotomies are keeping me alive, but did not stop the ongoing joint destruction. Rather than have my ankles fused, and knees, shoulders replaced, I choose to do light exercise and dea; with the pain.
- Colchicine Working / Worked
- I take a .6mg tab of colchicine in the a.m. It has been very helpful in relieving what was my greatest challenge, searing pain in the ankles whenever weightbearing. Has given me a new lease on life. Sorry it took so long to find (9years) and 3 rheumatologists to find out about it.
