Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
Hello,
I am thankful I found this site. I am interested to get some advices of other people and their experiences. My girlfriend who is Ecuadorian and our little girl of 4 both have EDS. At this moment we live in Belgium but during winter it is a hell to live here specialy for my girlfriend. On top of that people in Belgium does not always have much understanding for the invisible pain.
We are thinking to move abroad but I don't know good where to go.I never have lived abroad but I do traveled a lot around the world when I was young. I admit I am a little scared how it will be to move abroad and if I can do it. This a bit typical for Belgian people. We like our comfort zone. But I think it will help to see how my daughter and girlfriend will feel better.
Ecuador is a possibility but it is also far away and they don't have a good health care insurance like they do have here. Does people here also moved to warmer climates because of the EDS? And where did they go to? Did it make a huge difference to live in a better climate? Because of the climate I suppose there are less need of health care? Does people have experiences with countries where people have more understanding?
Thanks for reading my message. I would appreciate if I could receive some experiences from other people.
Michal
I am thankful I found this site. I am interested to get some advices of other people and their experiences. My girlfriend who is Ecuadorian and our little girl of 4 both have EDS. At this moment we live in Belgium but during winter it is a hell to live here specialy for my girlfriend. On top of that people in Belgium does not always have much understanding for the invisible pain.
We are thinking to move abroad but I don't know good where to go.I never have lived abroad but I do traveled a lot around the world when I was young. I admit I am a little scared how it will be to move abroad and if I can do it. This a bit typical for Belgian people. We like our comfort zone. But I think it will help to see how my daughter and girlfriend will feel better.
Ecuador is a possibility but it is also far away and they don't have a good health care insurance like they do have here. Does people here also moved to warmer climates because of the EDS? And where did they go to? Did it make a huge difference to live in a better climate? Because of the climate I suppose there are less need of health care? Does people have experiences with countries where people have more understanding?
Thanks for reading my message. I would appreciate if I could receive some experiences from other people.
Michal
If you haven't already moved, I HIGHLY recommend staying in a warm climate during its peak heat times, because the majority of EDS patients I've met and know, myself included, have SEVERE heat intolerance, that worsens with time.
Cold is definitely painful, it causes my joints to stiffen and ache a lot more, it's harder to travel outdoors, and so on. However, I much prefer that to dealing with my heat intolerance. Heat makes me physically incapable of functioning. I literally have to carry ice packs around every where I go to stay cool and keep from passing out. I can't spend long periods in the sun, i get heat rashes, heat stroke, burn easily, and so on. Orthostatic problems are also a large part of EDS and worsens with heat.
Personally I prefer cold over the heat, I'm more sore but at least I can "function" and don't have to lay on the floor with ice packs. This is just my experience and the experience of others I know, someone else may feel differently about it. Just my advice is to spend some time in the climates highest and lowest temperatures to make sure it's tolerable before making a decision.
Hope all is well.