A story from Mexico
I am a youn woman born in 1980, 1.35 cm tall, I weight 43 kg. I am the only one with MED, I was diagnosed at Shriners Hospital for Children in Mexico, with X rays. I had more then 10 surgeries, I don't remember very well but I will try to list them:
1989 Shriners Hospital Mexico. right knee alignment. My knee was not straight and I got very tired wilh lots of pain.
1991 Shriners Hospital Mexico. right knee alignment. My knee was not straight and I got very tired wilh lots of pain.
1993 Private hospital Mexico. Right knee alignment. My knee was not straight and I got very tired wilh lots of pain.
1995 Shriners Hospital Mexico. Right hip, the surgery is call Chiari, create a roof for the femur.
1996 Shriners Hospital Mexico. Left hip, the surgery is call Chiari, create a roof for the femur.
1997 Shriners Hospital Mexico, Right ankle alignment. Ankle was not straight.
1998 Shriners Hospital Mexico. Left ankle alignment. Ankle was not straigth.
1999 Shriners Hospital Mexico. Elizarov treatment for left ankle alignment for 8 months.
2000 Shriners Hospital Mexico. Elizarov treatment finishes so they take off the apparatous.
2008 Instituto Nacional de Rehabilitación. México (INR). Right knee allignment, They put a plaque to keep the knee aligned
2009 Instituto Nacional de Rehabilitación. México (INR). Right knee, took out the plaque.
In all my surgeries I had stayed no longer than one week in the hospital. To fully recover and restart a normal life, mmm it is hard to say maybe after 6 months, but then I will need another surgery. I needed constant help as I had to be in bed without walking for 2 months, I couldn't do anything by myself.
I had needed rehabilitation in all my surgeries. It has consisted in bend the knee again 180 degrees. Learn to walk again without waddle. Flexibility training. They have used hot bags and electrodes to warm the affected area and then be able to do the exercises. I had also have physiotherapy inside pools and baths with warm water to warm the affected area, this method works very well...
Every year I see an orthopedist and I take x rays. Well it is useful, but they always tell me the same. I only take pain killers if I really feel lots of pain, if not I prefer not to. I use Celebrex, the active substance is Celecobix. I had never suffered side effects. If I take pill I will take it twice per day maybe for 3 days no more.
I swim three days per week for one hour. I feel much better when I swim, I really recommend it. When I had done physiothery after my surgeries, I usually did it for 5 months. It helps a lot. I don't have too much pain but I get very very tired after 700 meters and I swet a lot from my lower back. I feel that my knee, arms and hips get stock sometimes. It also limits my movement. I cannot open my legs very well and I cannot bend my right knee more than 80 degrees. I cannot climb well or go downstairs. It is not pain, I just feel I cannot do it. I can swim, I love swimming. Swim is the best exercise for me and the only one I can do better.
The most pain is at:
Hips
Knee
Shoulders
I use a stick in the right hand to help my left hip. They are not improving my life quality but at least the keep it the same. I had used it for six years. I think I have Dominant form, but I need to do the genetic test. I have myopia but that comes from my Dad. Of course I had some psychological problem in my case, I had eleven surgeries and short stature, when I was a teenager it was the most difficult part. But I am okay now. I would say to other people with MED don't worry too much, let's be positive, don't talk too much about feeling ill because you get worst. I think technology is improving so they will be okay. It is possible to have a good quality life. Not overprotect your chidren, let them be independent. Eat well, do exercies. Learn to know your body and to accept the limits. We succeed in many ways like any other person without MED.
1989 Shriners Hospital Mexico. right knee alignment. My knee was not straight and I got very tired wilh lots of pain.
1991 Shriners Hospital Mexico. right knee alignment. My knee was not straight and I got very tired wilh lots of pain.
1993 Private hospital Mexico. Right knee alignment. My knee was not straight and I got very tired wilh lots of pain.
1995 Shriners Hospital Mexico. Right hip, the surgery is call Chiari, create a roof for the femur.
1996 Shriners Hospital Mexico. Left hip, the surgery is call Chiari, create a roof for the femur.
1997 Shriners Hospital Mexico, Right ankle alignment. Ankle was not straight.
1998 Shriners Hospital Mexico. Left ankle alignment. Ankle was not straigth.
1999 Shriners Hospital Mexico. Elizarov treatment for left ankle alignment for 8 months.
2000 Shriners Hospital Mexico. Elizarov treatment finishes so they take off the apparatous.
2008 Instituto Nacional de Rehabilitación. México (INR). Right knee allignment, They put a plaque to keep the knee aligned
2009 Instituto Nacional de Rehabilitación. México (INR). Right knee, took out the plaque.
In all my surgeries I had stayed no longer than one week in the hospital. To fully recover and restart a normal life, mmm it is hard to say maybe after 6 months, but then I will need another surgery. I needed constant help as I had to be in bed without walking for 2 months, I couldn't do anything by myself.
I had needed rehabilitation in all my surgeries. It has consisted in bend the knee again 180 degrees. Learn to walk again without waddle. Flexibility training. They have used hot bags and electrodes to warm the affected area and then be able to do the exercises. I had also have physiotherapy inside pools and baths with warm water to warm the affected area, this method works very well...
Every year I see an orthopedist and I take x rays. Well it is useful, but they always tell me the same. I only take pain killers if I really feel lots of pain, if not I prefer not to. I use Celebrex, the active substance is Celecobix. I had never suffered side effects. If I take pill I will take it twice per day maybe for 3 days no more.
I swim three days per week for one hour. I feel much better when I swim, I really recommend it. When I had done physiothery after my surgeries, I usually did it for 5 months. It helps a lot. I don't have too much pain but I get very very tired after 700 meters and I swet a lot from my lower back. I feel that my knee, arms and hips get stock sometimes. It also limits my movement. I cannot open my legs very well and I cannot bend my right knee more than 80 degrees. I cannot climb well or go downstairs. It is not pain, I just feel I cannot do it. I can swim, I love swimming. Swim is the best exercise for me and the only one I can do better.
The most pain is at:
Hips
Knee
Shoulders
I use a stick in the right hand to help my left hip. They are not improving my life quality but at least the keep it the same. I had used it for six years. I think I have Dominant form, but I need to do the genetic test. I have myopia but that comes from my Dad. Of course I had some psychological problem in my case, I had eleven surgeries and short stature, when I was a teenager it was the most difficult part. But I am okay now. I would say to other people with MED don't worry too much, let's be positive, don't talk too much about feeling ill because you get worst. I think technology is improving so they will be okay. It is possible to have a good quality life. Not overprotect your chidren, let them be independent. Eat well, do exercies. Learn to know your body and to accept the limits. We succeed in many ways like any other person without MED.