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Dear this morning…

Posted By HMSA Social Media Coordinator, January 19, 2016

Dear This Morning,

I am CEO of the charity The Hypermobility Syndromes Association. I would like to thank you for your apology this morning on behalf of the charity’s members.

We accept that hypermobility on its own is not necessarily a concern. However, for many people who have one of the hypermobility syndromes (such as the joint hypermobility syndrome, Ehlers-Danlos syndrome, Marfan syndrome, Stickler syndrome, Pseudoxanthoma Elasiticum or Osteogenesis Imperfecta) it can be a factor which needs management.
Hypermobility can go hand in hand with persistent pain and fatigue and the conditions are often very complex with multi-systemic involvement, having an HDCT is much more than just being a little flexible.

This is one of the reasons for the strong reaction yesterday’s caller and the lack of understanding given. Exercise is important to us all, whether we have a hypermobility syndrome or not., but needs to be tailored to the limitations of the individual. We would ordinarily avoid any contact sports because of the higher risk of injury or potential for cardiac or autonomic related issues depending on the specific hypermobility syndrome. There is no reason why PE cannot be adapted to the needs of the student. Even the most ‘dis-abled’ of students with an HMS can do something, even if that is physio exercises, stretching etc. This is a major difficulty that parents face with schools, though. Often there is a refusal to provide an alternative activity which leaves parents with no choice but to withdraw children from PE.

We believe that a little background to the experiences of people with a hypermobility syndrome is important to understand why so many of us took offence to the advice given to the caller and viewers.

For 55% of our members it takes more than 10 years for a diagnosis. This is totally unacceptable and the long wait until diagnosis often leads to increasing disability with the associated impacts on relationships, health, school or employment, finances, housing etc. Long term disability has a relationship with depression and anxiety. We now know that for some of the hypermobility syndromes there is a predisposition to anxiety.
As the hypermobility syndromes are genetic, this means that potentially individuals in multiple generations have the same diagnosis. A lot of the time this parent or grandparents diagnosed in adulthood have been let down by medical professionals. They have their own experiences of being told the pain they experience or other symptoms are more than likely ‘in their head’ and know from experience how easy it is for adults to dismiss a child’s complaints and how much damage can be done as a result. They also have not had medical, health or social interventions in childhood to help them to live positively and to be able to gain skills in self-management – which are critical to managing these conditions and they (not unreasonably) want better for their kids.

The comments made yesterday stirred real deep seated anger at how medical professionals view hypermobility and the hypermobility syndromes. There is a major difference between the two and many people felt that this was dismissed by the show.
We now know through research and via the work of the Hypermobility Syndromes Association, with medical, health, social and educational professionals that hypermobility can be indicative or more serious underlying conditions. These conditions need to be acknowledged and people’s experiences validated; we need to learn about our conditions and to have interventions which allow us to better self-manage, to enhance our quality of life and to enable us to reach our fullest potential.

For our children, this includes the right help and support in school. That is where our children spend the majority of their waking day. But sometimes it is an enormous effort to get through a school day and this needs to be acknowledged and lessons such as PE should be adapted to the needs of the child. That is where the true issue lays. Schools, especially those claiming to be sports colleges, need to provide PE activities which children with disabilities or conditions, can truly be active in. Perhaps, then parents would be less likely to withdraw their child’ participation.

Donna Wicks, Hypermobility Syndromes Association

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