Ehlers-Danlos Support UK
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Hi all diagnosis of type 3 but have a club foot can someone help

Hi just a quick question I have recently been diagnosed after 10years of medical neglect and subluxations with eds type 3. However I also have a club foot and am in a complete state of panic about possibly having vascular type. My rheumatologist Dr ho has seen this and did not mention vascular she said I have benign type 3. Is it still possible to have a club foot with type3

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HI my daughter has type 3 and not a club foot but has very deformed feet through bunions and has had this since she was a toddler, She was also diagnosed with a PFO (hole in heart), Her legs are not exactly straight and she has scoliosis and lordosis, plus a ton more, she is a teen and does not take perscribed medication as she has bad effects, After seeing the consultant that told her that the best way was holistics which she had been doing and still is. This way she get to do most things other kids her age just with micro management of symptoms, Ie: chronic pain in legs and back = Wheatgrass bath.

Take care :)

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My Rheumatology lupus clinic indicates that my version of infant onset SLE is the Vasculitis type, my EDH is I understand it, I'm EDH type3. am 62 and wasn't told about my infant onset lupus diagnosis until 5-6 years ago when daily systemic treatment began.

The cumulative effects of SLE going without daily systemic treatment had been dealt with indirectly via many different NHS clnics diagnosisg & treating my secondaries + A&E handling emergencies. Shortly after the underlying lupus was finally recognised, a brilliant prof ortho surgeon diagnosed equinus contractus which is a type of club foot - in my case due mainly to SLE-related tendon tightening which in the course of my life had progressively turned into CRPS of the forefoot on my worst side (the left foot is also affected)...a CRPS so bad & complex that it took medics 7 years to figure it out completely & get me onto the right treatment plan so that I can walk & stand again.

Finally, I'm doing really really well, and feeling better than I have since my 20s...except I have to follow my many treatment plans conscientiously & attend loads of different clnics regularly for monitoring. Immunology now thinks I have always had a Primary Immunodeficiency running alongside the SLE, from way back before I started daily immunosuppression. I feel like a walking contradiction: immunodeficiency + autoimmunity....I even have simultaneous raynauds & erythromelalgia.

But, believe it or not, I'm NOT worried...thanks to this wonderful forum + my lupus uk forum + my medics all being helpful & supportive...which makes it easier for me not to burden my family by I decommunising about my stuff...fuller diagnosis is the best thing that's happened to me. So, take care, take glad you're here...hope you'll keep us posted

🍀🍀 coco


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