This May I am participating in Dazzle Walk 2024 to raise money for The Ehlers-Danlos Support UK.

Now in our third year Annabelle, Rosina and hopefully some friends will be aiming to walk 13k as she approaches her 13th Birthday!

Although Rosina continues to be more stable than she has for many years, day to day living and life is not easy for her. Everything has to be planned and thought through extensively to give her the best possible chance of some stability and quality of life. Although she and we are much more experienced, EDS continues to throw unexpected issues at her just when we think we're on top of everything.

Rosina's body has been really challenged this year as she has been working hard and aiming high for her GCSE's that she is currently in the middle of.

We will continue to raise awareness and push for better medical education on EDS and associated conditions. We have been extremely lucky for her to be at this point only possible due to specialist medical support she has received in the last 3 years from a handful of amazing doctors. Not enough people have this and with no NHS pathway for diagnosis there is still too much suffering and a total lack of symptom management.

We did so well with our fundraising last year, we really hope we can do the same this year!