Hemophilia Support Group
Hemophilia is the name of any of several hereditary genetic illnesses that impair the body's ability to control bleeding.When a blood vessel is injured, a scab will not form and the vessel can continue to bleed excessively for a very long period of time. The bleeding can be external, if the skin is broken by a scrape, cut or abrasion, or it can be internal, into muscles,...
Hi everyone, my name is Steve, I'll be as brief as possible.
I have severe haemophilia A (less than 1%), but the injections and the limitations on what activities I can and can't do I have largely come to accept.
However I also have Cerebral Palsy, and in the last few years my kidneys have been a major cause for concern, they are currently doing what they can to avoid needing dialysis and or a transplant.
I have spent more than my fair share of time in hospital, but at present I am still able to walk independently and work an office job 9-5 five days a week.
Recently things have become too much for me, It's just one too many kicks in the guts for me to take.
My family and friends are absolutely amazing, and very supportive, however in my opinion none of them can truly relate to what I wake up to every morning.
I am in my early 30s and from Australia, (near Melbourne). I am looking for others to share support and common experiences.
I note not a lot of new discussions in this group, do people still use this?
Thanks
I have severe haemophilia A (less than 1%), but the injections and the limitations on what activities I can and can't do I have largely come to accept.
However I also have Cerebral Palsy, and in the last few years my kidneys have been a major cause for concern, they are currently doing what they can to avoid needing dialysis and or a transplant.
I have spent more than my fair share of time in hospital, but at present I am still able to walk independently and work an office job 9-5 five days a week.
Recently things have become too much for me, It's just one too many kicks in the guts for me to take.
My family and friends are absolutely amazing, and very supportive, however in my opinion none of them can truly relate to what I wake up to every morning.
I am in my early 30s and from Australia, (near Melbourne). I am looking for others to share support and common experiences.
I note not a lot of new discussions in this group, do people still use this?
Thanks
I'm a severe hemo, too. I just turned the Big 6-0 and have all the usual arthritis and other complexities that we both know all too well. Having a double-whammy with CP is a dimension that I can only imagine having to address. Not to mention the potential need for a kidney transplant. I can tell you that I have had several surgeries, and am about to undergo a total ankle replacement. Sure, there are risks, but surgery is not the end of the world. Especially if the outcome is making you better off than before.
If I can assist or put in perspective some concerns, just let me know!
George