Caroline

Mum of EDS child battling to be listened too - gastro issues / weight loss/ POTS - not fit for school - but being told it's Mental health and not believed 😩 ..

[Prof Jane Simmonds @jvsimmonds01]

Testing a new screening tool to assess the impact of hypermobility in young people which will help to direct patient care #Spider– The Ehlers-Danlos Support UK https://t.co/EyDRuYx5mf

[Standing Up to POTS @POTSActivist]

#POTS is a chronic invisible illness that can be incredibly debilitating. In this study, more than 50% need help with activities of daily living. Many POTS patients are young, and this level of disability can be devastating. We need more research to improve quality of life! #SUTP

[SEDSConnective @SEDSConnective]

📢 We are delighted to announce our new #lipoedema #lymphoedema plus more, adviser/specialist @karen_kazzie
Read her blog here https://t.co/O5mDibzMxc

#connectiveTissues #hEDS #HSD
#EhlersDanlosAwarenessMonth

[SEDSConnective @SEDSConnective]

Here is a simple diagram of some of the common symptoms/conditions and how they might be felt by you or seen by others.
If you have some, you might want to look further into the criteria for a diagnosis and talk to us
#EDSawareness #HSDawareness #SymptomaticHypermobility #JHS

[SEDSConnective @SEDSConnective]

Did you know ? May is #EDSawareness #HSDawareness and #SymptomaticHypermobilityAwareness month

Here are some of the most common symptoms and conditions :

[SEDSConnective @SEDSConnective]

@JGjanegreen

[SEDSConnective @SEDSConnective]

It’s #EhlersDanlosAwarenessMonth and we are raising awareness

Many people develop symptoms but then receive ‘normal’ test results.

It’s important not to give up on seeking diagnosis…

#EDS #HSD #SymptomaticHypermobility #Psychosomatic #JHS #diagnosis

[Caroline @Carolinewebstar]

⁦@JKPAutism⁩ https://t.co/mxMAGZTWqW

[Caroline @Carolinewebstar]

@autisticgpshh @bofasib @aheeleyRIBA @AutisticGirls_ @BendyBrain @JGjanegreen @BendyBrain
Follow these guys - they are already doing a lot of work in this area

[Hypermobility MD: Dr Linda Bluestein @BluesteinLinda]

That’s fascinating to hear and fits with the recent below article, “Some cases of hypermobile Ehlers–Danlos syndrome may be rooted in mast cell activation syndrome”, by #MastCell Disease expert, Lawrence B. Afrin, MD.

https://t.co/AJzosBd94L

[Caroline @Carolinewebstar]

@JGjanegreen @tes @AUconnective Well done and thank you for your great work 🥰

[Tes magazine @tes]

‘Where students are experiencing pain, the most important thing a teacher can do is to acknowledge it,’ explains @JGjanegreen, as she suggests adjustments to make in your classroom to support neurodivergent students
https://t.co/bpSJoqbzVk

[Caroline @Carolinewebstar]

@teamsquarepeg @TheEDSociety @NotFineinSchool @ehlersdanlosuk I’m a professional that works with children and EDS and POTS - I have done everything by the book as guidelines/ support groups POTS Uk / EDS UK & gov policy says - but the fact a NHS paediatrician disagrees with all the other 6 private professionals we have we can’t do a thing

[Caroline @Carolinewebstar]

@teamsquarepeg @TheEDSociety @NotFineinSchool @ehlersdanlosuk I’ve been on that Facebook group for 2 yrs - I have done everything suggested. The EDS group have also not been able to offer any support more than what I have already done - we have hit a brick wall.

[Caroline @Carolinewebstar]

@JGjanegreen @SEDSConnective @BendyBrain Definitely

[Jane Green MBE FCCT connective 😶 @JGjanegreenMBE]

@Carolinewebstar @SEDSConnective @BendyBrain Yes, for SymptomaticHypermobility #EDS #POTS #gastro #pain
We do need to be :

a)believed

b) funded - to have more support, research and education

c) have equal opportunities in education, health, social care and employment

[Caroline @Carolinewebstar]

@JGjanegreen Definitely- our children are so misunderstood by both health and education- need the NHS to catch up with private doctors and give the right guidance- a daughter with no education here because we are believed 😥