Help Francesca be pain free #Lipoedema For Operation 2 of 5
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I am trying to raise money for operations that will improve the quality of life and hopefully get rid of the constant pain of my 21-year-old daughter Francesca. They suffer from a condition known as lipoedema, which is a painful adipose tissue or disproportionate fat disorder. Many medical professionals are unaware of lipoedema in the UK.
This condition is usually triggered at times of hormonal change such as at menopause, pregnancy or at puberty as in Francesca’s case. The condition is often mistaken for obesity but no amount of diet or exercise will get rid of the diseased tissue or reduce its bulk. For Francesca the rate at which it has grown since the age of 10 years old, it is predicted that without intervention they would be bed ridden within 3-5 years and if it continued to grow at its current pace could cause complications such as lymphoedema and other circulatory issues such as blood clotting events and potentially lead to early death. This is the worst-case scenario of this chronic condition!
Francesca has done everything the NHS has asked of them and was on an NHS list for surgery to remove the diseased tissue causing the lipoedema. This was because standard conservative treatments had failed. However, the NHS has disbanded the surgery option for those with this condition (there isn’t even a non-NHS surgeon who is prepared to operate on Francesca in the UK). The reasons advised were that given the degree of the condition and the sheer volume of tissue needing removed. It really is far better to get this condition treated as early as possible before it grows out of control. To demonstrate the level of pain lipoedema causes Francesca, on bad days they are already unable to get out of bed due to the pain and restricted ability to move, requiring Oral Morphine amongst other painkilling medication (it is important to note that not everyone with Lipoedema has this level of experience). While most people who complete the surgical removal of the diseased tissue are left pain free, able to return to normal mobility and return to normal life.
As the situation currently stands and after consultations with several surgeons specialising in lipoedema Francesca will require a minimum of 5 major surgeries on different parts of their body. This is because of the several different types and stages of the condition Francesca is stage 3 to 4 (4 being the final stage). While the type of lipoedema they have affects every part of their body except the feet, hands, chest, neck and head. Commonly lipoedema only affects the legs or legs and arms.
When we found the surgeon who can do these operations, it gave her real hope and a smile I haven’t seen in a very long time. Then they said maybe I can get back playing rugby again or get horse riding occasionally.
Before this condition developed my bright, funny and loving daughter was able to enjoy horse riding which helped with their autism and took part in various sporting clubs such as swimming, playing rugby and martial arts to name a few. As the years have gone on and their weight has increased due to the growth of the diseased lipoedema tissue her world has shrunk, with each activity they had to give up. Yes, they have seriously struggled with their mood and wonders why she isn’t able to do the things her peers do. To get about because of the pain, or their legs collapsing beneath them as the diseased fat pad push the kneecaps out of place, they used crutches supplied by the NHS or the wheelchair for any distance. Because they want to play down how bad they are suffering they simply avoid leaving the house.
Yet they still exercise using static gym equipment (but not things like a bike because the lipoedema has caused their gate to be so wide that they physically can’t reach the pedals), or vibrations plates specifically for fat disorders and carefully monitors their diet (which she has had support from various dietitians over the years). Despite their pain they continue to study for their degree in the sciences at the local university but has had to go part time because of their health.
Once these operations are completed Francesca should be able to live a pain free life and physically be able to walk normally and ride a bike, like other young people. They aim to continue studying in the scientific field and who knows what the future might hold.
With each surgery requiring a minimum of a two week stay in Cyprus (a week in the hospital and a week with their MLD therapist visiting them every day before being cleared to fly home), with MLD therapy up to 3 times a week before each surgery and the same for 6 weeks after returning to the UK. As well as paying for pre-operative tests, made to measure stockings and all the medical care materials for the wound care. She will need a minimum of 3 months recovery between operations but most likely significantly longer if we are unable to raise the money required.
The initial operation will be on the fronts and inside of the legs to remove the pads of diseased fat which cause their knees to give way when they walk. The surgeon is limited to safely removing a maximum of 10% of Francesca’s body weight in inflamed tissue per operations, so some areas may need more than one operation.
We will add some photo’s as we go through this process so you can see the progress that is being made and hear about the difference it has made in Francesca’s life. Hopefully we will also be able to raise awareness of this condition to aid others in the future.
Conservative costs per surgery:
In-patient treatment/operation - £6500.
Pre-operative medical checks - £800.
Made to measure stockings and wound care management - £400.
MLD therapy pre- and post-operative - £1600.
Totalling £9300 before flights and accommodation. At today’s conservative costings without flights or accommodation the 5 surgeries would cost a total of £46,500.
This first operation is being paid for by the family coming together and combining it with Francesca’s university fund, their total life savings from birthday and Christmas gifts, even monetary gifts given at birth.
We really hope you feel able to help in any way you can. We as a family will continue to save any money, so we can get Francesca through however long it takes.
For those of you who are still with us reading by this point and who are interested in finding out more about this condition, reading some research that has been done by specialists in the field or looking for support themselves here are some links.
Additional Information
Research
Organizer
Tracey Cleary
Organizer
Scotland