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£900raised of £4,000 target by 26 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

21

  • Jules M11 hrs ago
    Jules M

    Jules M

    11 hrs 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.

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  • Jules M5 days ago
    Jules M

    Jules M

    5 days ago

    I had surgery 3 just 4 days ago. All went to plan and now I am trying to move about and walk. So far I have had 11.3 litres of this poison removed from my legs and I just wish it was all gone. The thought of 4 more surgeries, 2 still to go this year is exhausting. I have lots of fundraising going on and appreciate all the support and donations. Ria is doing an amazing 60 mile bike ride to help which I can't thank her enough for. She is pushing forward every day adding to her mileage and pushing 50 miles this week. :)

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  • Jules M22 days ago
    Jules M

    Jules M

    22 days ago

    Phew, surgery number 2 was successful. 4 more litres of this poison is out of my body. Certain parts of the surgery and recovery was harder other aspects easier. I do know it's already making a difference to daily life, and I'm looking forward to the next surgery on my right leg. I am working hard on physio but this heat, compression and movementdon't mix well. Getting ready for the fundraiser on Sunday and appreciate all the support and it's keeping me busy. Soon be time for surgery 3. Don't hesitate to ask me questions I am raising awareness.

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7 months ago

Jules M started crowdfunding

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Page last updated on: 8/14/2018 4:06 PM

Supporters

26

  • Michael Hiscock

    Michael Hiscock

    Aug 10, 2018

    Good luck with everything going on. Enjoy your bike ride Ria!

    £10.00

  • Nadia

    Nadia

    Aug 10, 2018

    £20.00

  • Sarah Jones

    Sarah Jones

    Aug 10, 2018

    Good luck Ria and best of luck with the surgeries Jules!

    £20.00

  • Anonymous

    Anonymous

    Aug 10, 2018

    £50.00

  • Lydia Kingstone

    Lydia Kingstone

    Aug 10, 2018

    Best of luck Ria a lovely thing to do for Jules!

    £10.00

  • Anonymous

    Anonymous

    Jul 31, 2018

    Good luck with the surgery

    £100.00

  • Anonymous

    Anonymous

    Jul 26, 2018

    Good luck Jules - and fab effort from Ria - hope the bike ride goes well.

    £25.00

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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