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£2,895raised of £4,000 target by 57 supporters

Weʼre raising £4,000 to To pay for 1 of the 5 surgeries I need this year. I am self funding as CCG refused despite evidence it's medically necessary.

Wiltshire, United Kingdom

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Story

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.

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Updates

23

  • Jules M3 months ago
    Jules M

    Jules M

    3 months ago
    Update from the Page owner

    Ria raised £778 by completing a 60 mile bike ride. Along with help from Sara a further £376.70 was raised on the tombola and cake sale with another £242 on the prize raffle. To say I am overwhelmed is an understatement. Thank you so much, I truly couldn't work with better people. Also a big thankyou to those of you who have eaten cake and given donations, sponsership and kind words. Everyone has been so supportive.

    Share this update to help us raise more

  • Jules M4 months ago
    Jules M

    Jules M

    4 months ago

    Poster showing some of the signs of stage 2 and stage 3 Lipoedema. Mobility is uaually affected by stage 3 due to changes in the way the body can cope with the bulk which puts strain on the joints. This is a treatable condition, however many doctors are unaware even with the NHS acknowledging surgical treatment is the only effective treatment. Its rare to get help even when wheelchair and bed bound. Help raise awareness as many ladies dont know whata wrong and blame themselves. Diet and exercise do not affect Lipoedema. Please share.

    Update from the Page owner

    Share this update to help us raise more

  • Jules M4 months ago
    Jules M

    Jules M

    4 months ago

    I managed to walk a little today (with crutches) halfway up Malmesbury high street. Had a frappe and then back to the car. It's small progress. On the other hand Ria has managed a muddy 44 miles and keeps pushing forward with aches and pains. She has been using #RidingforJules on FB. Please help support both of us by sponsoring her for the 60 mile bike ride. My Cousin is also running the Nationwide Half Marathon, which is no small feat either. Hoping my family will sponsor him as well via the just giving page.

    Share this update to help us raise more

1 year ago

Jules M started crowdfunding

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Page last updated on: 10/18/2018 7:43 AM

Supporters

57

  • Anonymous

    Anonymous

    Oct 18, 2018

    Keep strong, I know you can come out the other side positively.

  • Patrick

    Patrick

    Sep 25, 2018

    Good luck

    £100.00

  • Maria Curley

    Maria Curley

    Sep 17, 2018

    All the best! xx

    £10.00

  • Anonymous

    Anonymous

    Sep 12, 2018

    £10.00

  • Delia Telling

    Delia Telling

    Sep 12, 2018

    £5.00

  • Colin Maisey

    Colin Maisey

    Sep 11, 2018

    £50.00

  • Sarah Harber

    Sarah Harber

    Sep 10, 2018

    Sponsorship for Ria's bike ride! Well done Ria and good luck Jules with the rest of your treatment.

    £30.00

Jules M

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About the fundraiser
Jules M

Jules M

Wiltshire, United Kingdom

I am a full time working mum. Sole carer for my children and have Lipoedema. I am saving every penny I can to contribute to these surgeries but time is of the essence as I am in daily pain and progression is aggressive. I can no longer walk unaided and I need your help.

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