The Sussex group helping to save lives by raising awareness of little-known disease

Members of SEDS at a recent group meeting
Members of SEDS at a recent group meeting

SEDS is the Sussex Ehlers-Danlos Syndromes and hypermobility voluntary community support group.

The group is raising awareness in education, transport, health and social care across the county and nationally.
It has already helped to save four lives this year and usually holds its meetings in Crawley. It also meets in places like Brighton, Copthorne, Crawley Down, East Grinstead and Horsham.
The group also need to desperately raise funds by doing zebra cake sales, representing SEDS as a nominated community group for your events, raffles and so on.
It says no other disease has been so neglected by the medical profession as Ehlers-Danlos Syndromes. SEDS is delighted that more research and educational initiatives are taking place nationally.
This is a member’s account from Jacky Greenaway:
'In December 2017 my son, 12, broke his wrist for the second time and came down with flu but didn’t recover well. After many visits to the GP who said it was viral, we finally saw a doctor who believed he had something called PoTS.
We’d never heard of it but agreed for our son to be referred to a cardiologist at a London children’s hospital.
Our son also lost a huge amount of weight within a short period of time, and were advised to take him to A&E at a local children’s hospital for more immediate tests.
He was treated for an H.Pylori infection which it turned it he never had, and the cause of the weight loss was never established.
After a gastric emptying study which was inconclusive, he was discharged from their care yet, his symptoms were progressing. He was chronically tired, nauseous and developed heavy nosebleeds on getting up which were often followed by migraines.
His school attendance suffered and when he finally got a diagnosis of Postural Orthostatic Tachycardia Syndrome (PoTs) in 2018.
He was started on medication to increase his blood pressure and another to lower his heart rate.
However during a follow up appointment with his cardiologist we were told our son also displayed characteristics of Ehlers Danlos Syndrome (EDS).
We paid to see a geneticist who confirmed Hypermobile EDS, but also advised us that we should have vascular EDS tested. Luckily it was negative.
He is waiting for physiotherapy locally. After seeing a gastroenterologist who is PoTS, EDS aware, we now eat a diet which has improved his nausea.
He’s always had stomach issues, leg pains brushed off as growing pains, usually covered in bruises, and enjoys ‘party trick’s where he bends his fingers and legs into unusual positions.
His in-stepping never improved so now has orthotics to correct it.
It is such a shame that no-one was able to ‘connect all the dots’ so that he could have had a NHS diagnosis much sooner.
Joining SEDS has been great to meet others, share information and help signpost other parents who have children with PoTs and EDS. Looking forward to doing the activities soon.'
If you suffer from any symptoms such as soft skin that is easily bruised, pain, extreme fatigue, dizziness, nausea, fainting or clumsiness please get in touch via any of the following ways:
SEDS facebook page is here: https://www.facebook.com/SEDSHSD/ and our email address here: admin@infosussexeds.org.uk

Charlotte Schroeter and Sam Kennedy helping at an event in Brighton

Charlotte Schroeter and Sam Kennedy helping at an event in Brighton

Jacky Greenaway with her son Ethan

Jacky Greenaway with her son Ethan