Who are the people who can help me?
There are a lot of people who can help you; like your parents, teachers, nurses, doctors, physiotherapists, occupational therapists, podiatrists and psychologists.
It is unlikely that you will need to see all these people but they may be able to help you. Your parents can look at other parts of our website for more information.
What is a physio?
A physio, or physiotherapist, can help you to become stronger in your muscles, which can help to stop injuries and help reduce the pain. They will normally look at how your body moves and see what exercises they can show you to help.
What is an OT?
An OT, or occupational therapist, can help to find ways to help you to cope better on a day to day basis. They may be able to help in schools when you find it hard to write or if your chair is causing your back pain or even with eating! They can advise you and your parents on ways to do things so that you don’t increase your pain. Sometimes they may give you exercises or splints or other objects to help you.
What is a rheumatologist?
A rheumatologist is a doctor who looks at how healthy your muscles and bones are. This may also be called musculoskeletal medicine. This is a big word but you don’t need to be afraid. The rheumatologist will look at your body and how bendy you are, what your skin looks and feels like, any bruises you have and other things. They will ask your parents some questions about you and how you are affected by the problems you face. It is a rheumatologist who will tell your parents what type of hypermobility syndrome you may have. If they are not sure then they may send you to see a geneticist (see below).
What is a geneticist?
A geneticist is a special doctor who looks at your genes to see if they can find out what type of hypermobility syndrome you may have. Some hypermobility syndromes run in the family, or are genetic, which means the same thing. The geneticist will look at your body and your skin, and then ask you and your parent lots of questions. They might want you to have some special blood tests or a biopsy. They will be very gentle with you and there is no need to be afraid. It can take a long time for your tests to come back to the geneticist and they may not be able to find anything. That doesn’t mean that there isn’t anything wrong with you or that they don’t believe you hurt. It may be that there isn’t a test available or the gene that is causing the problem, is still not known.
A podiatrist is someone who looks at how your feet and ankles work. A lot of children with a hypermobility syndrome have what we call flat feet and wobbly ankles. This may cause you to have pain in your ankles and knees and stop you wanting to walk very far.
A podiatrist will look at your feet to see if there is any gap between the middle of the bottom of your feet and the floor. If there isn’t one they may decide to give you special ‘insoles’ which you pop in your shoes. This helps to correct how you use your feet when walking. It may be uncomfortable at first but you will get used to them very quickly.
Sometimes the insoles don’t work or you have extra bendy ankles, which makes you fall over more than other children. A podiatrist might think you would be better in special boots with a built in insole. It can help to reduce pain and tiredness in your leg muscles, knees and ankles if you use your boots for schools and walking.
What is a psychologist?
A psychologist is a professional who looks at how you think and feel about having a hypermobility syndrome. Some children find it hard to cope with ‘feeling different’ than other children or having to go to so many hospital appointments or having pain every day.
A psychologist can help you with this by listening and helping you to change how you feel. They may look at teaching you different ways to cope, such as pacing, relaxation or distraction. Sometimes a psychologist only works with you but they can work with your whole family.
Some people confuse a psychologist with a psychiatrist. They are not the same and seeing a psychologist doesn’t mean that ‘no one believes you’ or that they think you are ‘mad’. A psychologist just wants to help you to ‘cope’ or ‘manage’ your condition more positively because sometimes it can be hard to find a way to deal with things.
Who else can help me?
The staff and volunteers at the HMSA can help you and your parents. You can come along to our events or local groups to meet the staff and other children.
The children like to get together because they don’t need to tell each other why they can’t do things or why they can’t do them well. The children like playing together, talking and doing special things, like learning to manage any pain. The HMSA holds special events for children and their parents to take part.
We also have a special place in the HMSA Journal for all children. You can send us questions and we will answer them in the HMSA Journal for you to read. We also have a special Youth Reporter, who is a young person between the ages of 12-16, who writes about how hypermobility syndromes may affect children. So you can read this too!
You can also email Donna and Hannah in the office on firstname.lastname@example.org or email@example.com and they can answer any questions you have. Hannah is the HMSA patron for children and young people. She is very good at explaining to you how you can learn to manage your condition. Hannah has written some special information for young people on hypermobility syndromes. You can have a look at Hannah’s information at the events we run.
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