The story of Helga
My name is Helga, I’m 35 years and I have EDS (Ehlers-Danlos Syndrome) hipermobility type. I found it two years ago when my body started to collapse on my own work. I’m agronomic engineer, but I had no work in my area, so my brother and I decided to open a take away business. I worked there three years and I started to not be able to stir the food as it should be, to falling without reason, to be unable to lift my left leg. And pain started. A lot… Everyone thought that I was faking, because the evolution was very fast. I started by taking infiltration in my right shoulder because I had a tendonitis which prevented me to move my arm. Then exams showed that I had trochanteric bursitis and that’s why I fell down. And my knees were very bad moving over the place.
A year later I made more exams and it was found that I had coxarthrosis.
I have pain every day. I had to leave my job. Doctors gave me 70% of incapacity and 60% of physical disability. I take a lot of pills every day.
My skin is very sensitive. Now, in winter, my hands have a lot of injuries. They are always cold.
When I was baby, I started to walk very late, but doctors said that I was lazy. I twist easily my feet and I’ve had some tears of ligaments.
I’m tired of the pain and the mobility difficulties. Sometimes I just would like to disappear. I know that’s not fair because there is much more people with problems much more complicates than mines.
I can’t walk my dog, I can’t clean my house, I can’t make a properly lunch, I can’t clean my room, I can’t take care of my clothes, I can’t sleep properly because of pains, I can’t be setting more than an hour without pains neither stand up. My left leg don’t have strength enough to walk more than 15 minutes very slowly. I have a lot of pain in my right knee when climbing stairs and sometimes it moves over the place.
My life quality is not as good at it should be.
Unfortunately my mother has been operated six times to inguinal and abdominal hernias. We found that was her family that had the disease. But no one had suffered ligament problems like me. All had had hernias.
I don’t blame my mother, because no ones fault. And I’m not sorry for myself.
Sometimes I feel angry with myself for doing nothing more for my happiness. My happiness does not depend on my rare disease. It is a limitation that I have, but there are things that I can do to try to be in least happy.
I say farewell, wishing all the people who have a rare disease that have faith, hope and do not leave anything to do in this world, however little that you think it may be.
Helga