Ehlers-Danlos syndrome (EDS) community

Ehlers-Danlos syndrome (EDS) is a genetic connective tissue disorder characterized by joint hypermobility, skin hyper extensibility and abnormal wound healing.

The correct diagnosis was a turning point

Written by Karin_L, published 5 days ago.

Our daughter showed symptoms of EDS at a very early age. At 6 months she started crying at night which the pediatrician diagnosed as colic. In her case the pain never went away and at 14 months she indicated that the problem was in her legs, not in her stomach. That was when we started the long, frustrating and exhausting process of finding the correct diagnosis which took us through many parts of the Swedish health care system.

She was 8 ½ when we finally by chance met a doctor with the experience to put all the pieces of the puzzle together and recognize the symptoms as EDS. At that time she was a lot smaller than other children her age and both she and we suffered from eight years of sleep deprivation. She had dislocated both her elbows dozens of times, had trouble walking due to sprained ankles and was constantly exhausted.

With the diagnosis came the knowledge of how we could help her and a new understanding from doctors and nurses. Ordinary Ibuprofen was prescribed to help her sleep at night. Soft orthotics have helped her to support loose joints and made it possible for her to have an active life and participate in sports activities. Some adaptations in school decrease the tension in her muscles considerably and make it easier for her to concentrate on the topic at hand.

She is now 12 years old and lives, under the circumstances, a normal and active life. We help her at home with her physiotherapy and try to be proactive to balance her physical shortcomings. We also plan her life more than most parents to keep the physical activity at a good level and make sure that she gets the time she needs for rest and recovery.

I have thought a lot about all the pain medication that we have given our child and worried that the chemicals may do a lot of harm to her growing body. I never gave any thought to what the sleep deprivation did to her. Sleep is fundamental for the wellbeing of every adult and child and to not be able to sleep due to chronic pain puts a lot of stress on the body. Since we started giving her pain medication every night she has started to eat, grow and shows in every way possible that she feels a lot better. She also tolerates the pain better during the day, performs better in school and rarely needs any pain medication in the daytime.

In most cases EDS is a hereditary condition. This automatically means that at least one of the parents also is affected. In our case I am the bearer and suffer from similar pain and exhaustion. You can only imagine what happened to me during the 8 year period when I had minimal chances to sleep at night and carried my exhausted child around. (Not many 8-yearolds need to be carried to and from school.) The treatment that she gets now has greatly improved my physical health as well and that is a fact that cannot be valued in money.

Here are some tools that have helped us and her in our daily lives.

For gentle physiotherapy: Exercise ball, rubber bands and balance board, along with a training program developed by a physiotherapist.

In school: Adjustable chair, ergonomic pens with soft grip, laptop computer, soft wrist and ankle orthotics. Some adaptations have been made to help her participate in the Physical Education classes.

Sleeping: Mattress that relieves pressure on the body, silk sheets to turn around easier

Pain management: TENS machine, massage bed and prescriptions for pain medication

Mentally: Contact with doctors, nurses and physiotherapists who understand that she really has a medical condition that needs treatment. From time to time she, I and her father have had contact with therapists to learn cognitive techniques to handle pain.

Written by Karin_L, published 5 days ago.

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