This is a devastating condition and I can no longer walk unaided. I didn't know it existed a year ago.
I left teaching, as advised by specialists as my legs hurt, my limbs swelled and I just thought it was from being stressed and on my feet and working crazy hours. I noticed my legs were really swollen, becoming misshapen and bumpy. I got referred to a&e, several consultants, specialists etc and a baffled GP until a lymphedema nurse told me I had Lipoedema with secondary lymphedema.

Lipoedema is a genetic condition, linked to hormonal changes that does NOT respond to diet and exercise.I cannot do anything myself to treat it. I've even seen images of anorexic women with massive lipoedema legs and arms.
There IS a treatment, it's recognised, there are longer term study results and there is an NHS doctor in England willing to treat me, but Wilts CCG won't fund it. They recognise my exceptional circumstances but just said "we don't fund this surgery" the decision goes against NHS medical guidelines, and recommendations from the UK leading specialist, GP and my nurses.

My MP and Health Secretary are trying to change this but it will take longer than I have left to change policy.
I have days I can't move for pain, I ache and my lipoedema is making me anaemic. I now need crutches to walk daily as I am no longer able to bare weight.
There is a private UK surgeon but she wants 48k to treat me. So after research, I have found a Dr who can help in Rotterdam, I need 5 surgeries. Each cost around £4000. I am saving everything, this is so important. I dont want to lose the ability to lift my legs and become bed bound.

I always had 'chunky' legs but put it down to Hiking, Caving, Swimming and Diving. However hard I tried my tummy and torso were slim but not my arms and legs, clothes wouldn't fit, if have to go up two sizes to make trousers fit which would hang and gather on my small waist.
I am devastated at the effect this is having on my and my childrens daily lives.