Hypermobility Syndrome, AKA Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Hypermobility Spectrum Disorders (HSD)

June 22, 2015

When did it begin?

  • Does your child complain of leg pains, especially in the evenings? 
  • Does your child stoop or has a bad posture? 
  • Does your child have a strange way of running, or avoids running altogether?
  • Does your child find it difficult to sit on the floor or lie down with legs straight?

My earliest memories of pain go back to my primary school days. I started having pain in my legs right behind the knees. The pain would appear in the evening and was quite intolerable for me.

The pain appeared after I walked or ran a bit. I could not really run too well, I always felt I was a bit "off balance". I had an abnormal gait while walking, which was more pronounced on running. I ran in a weird way, so to speak. I also had a stooping posture (kyphosis). I also could not lie down supine with my legs straight out - I had to keep my knees bent. This is an obvious sign of tight muscles, and there is a lot of literature on tight muscles and pain problems in children, even when not related to hypermobility.

My parents had consulted doctors, who gave me calcium pills. I was never examined in detail regarding my posture or the biomechanical aspects of my joints and muscles (presence of hypermobile joints). Growing pains are quite common in childhood, as is hypermobility of joints (with it being the part of a disease). Often small tell-tale symptoms like mine go unnoticed because of these facts. I also have congenital spina bifida, which was diagnosed on scans during my twenties. I do not now if it had any contribution to the pain I had as a child.

The pain stayed till I was in my late teens, and looking back, actually decreased around the time when other more serious musculoskeletal problems started. 

If your child has any of the problems I listed in the beginning, you should consult a good orthopedist and also a good physiotherapy center who are familiar with pediatric physiotherapy, sports physiotherapy and assessment of spinal problems and hypermobility.

I do not have any personal recommendation for any physiotherapy centers in India. However, I have seen relevant scientific articles by the physiotherapy departments of AIIMS and CMC Vellore, suggesting their staff are familiar with these conditions. I have also communicated with a physiotherapist in New Delhi, who said she was very familiar with JHS/HEDS. I would welcome any information from parents who can suggest good physiotherapy centers from their experience.