Does anyone have the bone disease Ehler's Danlos? If you do please answer this!?!

Does anyone have the bone disease Ehler's Danlos? If you do please answer this!?

I have recently been diagnosed with it. I have broken nine bones in around two and a half years. it is painful and it sets off my routine... running every day and doing yoga. I am a very healthy person until I break something. After it heals I have to build it up again and it is not fun! How do you deal with it? Please, no dumb answers like "I don't know, I dont have ED" or "I dont know, deal with it".

I am a teenager and sick of everyone thinking I am clumsy when I break something so I would like to know how to avoid it but not put your life on hold :-)

Aww...I am truly sorry and I feel so bad. It must be so tough during the teenage years to have discover this disease. Try not to run! It is important to ensure that when you exercise there is absolutely no stress the joints. Contact sports such as football, rugby, basketball and hockey are not recommended for anyone suffering from Ehlers-Danlos Syndrome (EDS).

After your breaks heal, the best way to rebuilt your strength is by doing water training. It is the basic building block of therapeutic and conditioning programs for those with EDS. In water, you can walk, run, jump and kick without any trauma to your weight-bearing joints. The moment you slide into the water for a workout, you feel significantly better. Pain is reduced; mobility is regained. Where you sensed helplessness, now there is hope. For in water, you can perform movements that seem but a dream on land. Remember to not try to hold his/her head up out of water as this can place undue stress on the neck.

There are support groups that will be very helpful. They will give you real-life experience on how do deal with it. Plus they will TRULY understand what you are going through.

This website is very helpful: http://www.ednf.org/

Good Luck!