Hypermobile Syndrome Support Group
Hypermobile syndrome is characterized by the ability to move a joint beyond normal range. People with hypermobility syndrome may develop other conditions caused by their lax connective tissues. These conditions include Gastroesophageal Reflux Disease (GERD), Irritable Bowel Syndrome (IBS), varicose veins, flat feet, scoliosis, sprains, tendonitis, and bursitis.
Hi my name is Charlie and I was diagnosed with JHS in December of 2016 and was sent to Alder Hey children's hospital in July of 2017 and the doctor didn't listen to a word I or my parents said. Following the appointment, she said I wasn't hypermobile but seen other doctors since then and they all disagree with her. So any ideas on what I should do would really be helpful.
I am sorry to hear about your experience with this doctor. I have also had this problem and i know how frustrating it is. I think you should try to get a second opinion from someone else that is at the same grade as that doctor or higher and just hope that you get to see someone that is doing there job properly.
I have suffered with my knees dislocating for 30 years now and i have never received a diagnosis even though i have had three major operations on my knees . They had done these operations to re-aline my knees even though they were never out of line it was the flexible tendons that were stretching and my knee would come out of place. My knees have still dislocated since the operations. It was only the other day that someone advised me to look this hypermobile syndrome up and i have all of the traits of this syndrome.
If you are not lucky enough to get a decent doctor try not to let it get you down because these people are not gods even though they like to act like it. They can't heal us with a diagnosis anyway. Try to look as this experience as a storm that you are passing through. You will get through it. Try to learn the lessons that this storm has to offer and grow stronger in those areas. We are all different and it is the strengths that we gain on our journey that enable up do archive extra ordinary things.
I do not know if there are any cures for this syndrome but have been advised that it is to do with the body not being able to produce enough collagen to strengthen the ligaments and tendons. I think that working on your diet to achieve a clean healthy diet, trying to eat an organic mostly vegetable diet will help and eating extra portions of foods that help build collagen would be a good idea. I have noticed a big difference since i cleaned up my diet. if you do decide to work on your diet there is a website that has helped me make sure that i am getting all the right nutrition it is called CRONOMETER.
I hope i have shone a little light on this dark situation that you are experiencing. Try to remember that you will get through this and you will be a stronger person because of it.
If there is anything that i can help you with, message me and i will try to help
Kind Regards
Daniel