My 15-year old granddaughter has been doctoring for over a year now. She’s so far diagnosed with POTS and Amplified Musculoskeletal Pain Syndrome (AMPS). One of her doctors refers to AMPS also as fibromyalgia. There was also discussion of whether or not she has Ehlers-Danlos Syndrome because of her hyper mobility. She seems to be gradually getting worse and her mom is at her wits end trying to get help for her.
I told her I’d see if there’s a Ben’s Friends support group for teenagers/young people with the same kinds of diseases.
Can somebody please tell me how to go about getting her accepted into a support group if there is one that fits her needs?
we do not have any group specifically for pots , but we do have support groups within the Ben Friends Network for fibromyalgia and for ehler danlos syndrome. If you have trouble finding them I can send you the links for the specific groups.
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If you would, please. I want to make sure I give her the right info. Then she can decide. Do you know if there’s a subgroup for younger people?
I haven’t noticed one in either group but I’m not sure.
Re. the tentative EDS diagnosis, does the hospital offer any support at all for young people? If not, how about encouraging your granddaughter to hook up with any other teenagers who are around when she visits the hospital?
It’s such a variable condition. My son doesn’t know anyone else with it apart from me and I don’t appear to have any troublesome symptoms. When he did attend a support group, everyone else there was disabled. He’s in his '30s and that just made him realise how lucky he was to be mobile and strong, but it could have been worrying for a young person.
Making contact with others of the same age whose issues are similar and, perhaps, just as uncertain, would seem the best option.
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Thanks, Sybil.
She’s one of the disabled ones. Her symptoms are always present, but like with any inflammatory disease every day is different. She walks with a cane some days. She walks “different” and her posture is bad. She pushes herself. She has a part-time job now and is involved in the school theater, so she tries to cope. She’s always had a weak voice. I nicknamed her “Pipsy” when she was little because you could hardly hear her talking.
I’ll give her the website info and hope if she needs help she goes there.
Doh, sorry. I guess my definition of disabled has changed since having PsA. Son was shocked to find that hyper mobility EDS could put people in a wheelchair. Didn’t mean to downplay your granddaughter’s symptoms. It’s not inflammatory incidentally. But it can affect the whole person - really strange experience being diagnosed, alongside my son, based on our facial features and physiques as well as other things. I thought to myself ‘so this isn’t something I’ve acquired, it’s part of who I am’.
One good thing is that there’s a big drive towards improved understanding of the disease and improving diagnosis and care. Let’s hope that drive forward moves quickly.
Your granddaughter sounds awesome. Maybe one day she’ll get involved in helping others with the condition - perhaps she might suggest a young person’s group on the BF forum. The more young people are diagnosed, the greater the need for strong individuals like her to help other EDS people see that actually they’ve been fighters all along.
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It’s the AMPS that’s inflammatory I think. IDK if POTS is inflammatory. Some doctors say she has EDS too and some say she doesn’t. I think my comment was confusing…I’m confused as well as her and her parents because nothing has been a definite diagnosis yet. We all know how that goes—it’s a long road to diagnosis and a longer road to finding the meds that work! 
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So sorry, Grandma_J, that your granddaughter has to go through this at such a young age. The EDS community is a bit quiet, but she’d certainly be welcome to join up. Maybe she could kick a little life into it! She sounds like an amazing, determined young woman. My hat’s off to her.
The FM group is quite active, and she might like being the “youngster” of the group.
In the meantime, give her a hug from all of us.
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Thanks, Seenie!