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Jules M raised £2,895 from 57 supporters
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Closed 24/02/2019
Weʼve raised £2,895 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
- Funded on Sunday, 24th February 2019
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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.
Updates
24
- 6 years ago
Jules M
6 years agoWell 6 surgeries have now been completed between 5th March 2018 and 24 Jan 2019. It's been a tiring long year. I'm still recovering but can see the light at the end of this long journey. I may possibly need a 7th surgery but won't find out until April. If I do I will be taking a break and postponing it until March 2020. Giving me time to save and spend quality time with family and work on physio. Massive thank you to everyone who helped fund raise as it really did pay for one whole surgery with on and offline donations.
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- 6 years ago
Jules M
6 years agoRia 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.
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- 6 years ago
Jules M
6 years agoPoster 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.
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Jules M started crowdfunding
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Supporters
57
Anonymous
Oct 18, 2018
Keep strong, I know you can come out the other side positively.
Patrick
Sep 25, 2018
Good luck
£100.00
Maria Curley
Sep 17, 2018
All the best! xx
£10.00
Anonymous
Sep 12, 2018
£10.00
Delia Telling
Sep 12, 2018
£5.00
Colin Maisey
Sep 11, 2018
£50.00
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
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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.