32 yrs of not knowing

[123poppy]

it is like a ton weight has been lifted off my shoulders , for decades I have felt ignored and disbelieved by doctors and consultants , not just for myself but also 2 of my children and more recently my granddaughter . I now think I have a few traits as have had a spinal op in my 40s and have undiagnosed R,A take a concoction of pain relief and beta blockers for raised B,P , my daughter has talipes eqinovarous , scoliosis extreme allergies short stature and many dislocations , she is currently nursing a 4x hip fracture , all my 3 children have teeth over crowding with 10 teeth removed before losing baby teeth the same as myself and my granddaughter , my son and g,daughter have flat feet and very hypermobile joints and long long fingers , I could go on and on but my point is due to lack of diagnosis they have all got seriously ill and the recent with my g,daughter with septic tonsiltus and what I believe was rheumatic fever , so we have used the private consultant tactic and have now had our 1st ever visit to a geneticist HALLEUA it all makes sense at last and I am hoping they will not have to get dangerously ill in the future before getting treatment , I don't think G.P or rheumatologist will completely or fully on paper make full diagnosis of EDS or genetically linked illnesses and this prevents support with education and medication , in an ideal world it wouldn't but hey ho so 32yrs of fighting for the truth since my daughters birth and many many hospital visits planned and unplanned it looks like finally we have got to the truth but I am sad when I think over the years how much suffering could of been spared if we had been pointed in the right direction , so feel free to share this to anyone you know that has pain and many illnesses that they cant get to the bottom of , best wishes

[Jay66]

It is a wonderful feeling when everything finally fits into place, and such a relief when you are looking at your family's illnesses and can find the cause - join the dots to see the picture.

[Tillyray]

Hi poppy.I can totally relate to your years of experiences with Doctors returning no answers, relentless worry over your children and finally the relief and joy to have your suspicions confirmed and receive a diagnosis. You will all now be able to get the treatment you need,and have the knowledge of your condition to guide the other medical professionals responsible for your care. I am so pleased for you. I know it is a hard fought journey and it takes courage to push on. Well done!!😊 Good luck and best wishes to you and your family xx