Ehlers-Danlos Syndrome Support Group

I decided to write here because I just found out I probably have vascular type ehlers-danlos. My father had it too but he died when he was in his forties when a stint broke that was supposed to fix an anurism he had. He died a month after the surgery. the doctors said his veins were like a 70 year old mans. I was 21 at the time and I was pretty sure I had his genetic condition. So do my two brothers. I have incredibly weak skin and have scars covering my legs and arms. I have been active my whole life. I left town to travel when I was 21 after my father died and have been on the road ever since. I have seen 48 states, many countries. picked up a variety of skills and professions. Ran two small businesses to support myself while traveling. Overall I have lead an extremely fulfilling life. I do have problems associated with it, I carry extra bandages and I take a lot of herbs. I was assaulted by police officers and forcefully handcuffed behind my back and it tore my shoulder which has never recovered.
I eat really well. Very diverse food, many vegetables and fresh meats and grains as well. Mostly vegetables and fruit raw during the morning and very heavy and fatty meat meals in the early evening or afternoon. I learned I can't eat much sugar and I need a lot of protein. Also, I need a ton of water. I don't handle alcohol well as I get bad hangovers which I am not sure if it is associated but so I don't drink. I also don't take any medicines except for the occasional spirit-quest ones. I don't even take painkillers even though my joints hurt.
overall I was never scared or dark about my situation, even though I never planned to live past 50. All living things have a terminal illness. It's something I understood very well since childhood. But, more recently I found out what this disease actually is and how I am highly likely to pass it on to my children. My partner wants to have children in the next few years. It is really an important aspect to our plans. I really don't think I need to explain too much about what I am thinking about all that. except maybe that I have lived a great life, I have never been scared of death, and I never wanted to be old anyway, so maybe I shouldn't worry too much about passing on a similar condition, so long as I can pass on a similar life-view. Or maybe I am weak and defective, and shouldn't breed for the good of the human genome (but that is sort of a joke, as it contradicts my "nothing is sacred" attitude). My friends tell me that I certainly must have some sort of hidden ability associated with the gene and that my successors will survive some unforeseen catastrophy due to their genes.
Anyway, the diagnosis scares the shit out of me, but nothing has actually changed I suppose. Thanks for listening.
Posted on 05/31/12, 02:19 pm