What is Lipoedema? Lipoedema (NOT Lymphoedema) is a chronic, hereditary and genetic disorder of the adipose tissue (or body fat) which can be both disfiguring and painful. It predominantly affects women (although men can also suffer) from the age of puberty and beyond. Sufferers may have a normal slim (upper) body shape but a much larger disproportionate lower body below the waist without changes made to diet or exercise regime, in some cases, upper arms are effected too. As Lipoedema progresses, additional, expanding fat cells interfere with the pathways of lymphatic vessels and sufferers can develop secondary Lymphoedema and it then becomes known as Lipo-Lymphoedema. The effects of Lipoedema on the patient can also cause great psychological distress for the sufferer.
Claire lived with Lipoedema for 17 years before getting a correct diagnosis. On all visits her now 'retired' GP dismissed her condition as obesity to which Claire now angrily refers as the 'fat card’
As a hard-working, single Mum to Alfie (8), Claire works as a Primary School Learning Support Assistant, helping support two children with learning difficulties. Previously Claire worked for Hampshire Police in a '40+ hours-a-week' role but had to make a drastic career change because of the pain caused by sitting at a desk all day. Claire has shared her story with PhysioPod in order to help raise awareness of the medical condition ‘Lipoedema’ and to also ask for the nations support to help raise funds for the Liposuction she desperately needs. Sadly, her NHS case for Liposuction has been declined by her GP.
Age 15 - first proper boyfriend and the
first signs of Lipoedema started to show..
"I grew up with my older Sister Julia, my Mum Lyn and Dad John; I had an active happy childhood. When I reached the age of 15 year I met Paul, my first proper boyfriend. It was at this age I noticed that my ankles appeared swollen, so I made an appointment to see my GP, my mum came with me. I had a male GP at this time and he looked at my ankles and told me I had water retention and gave me water tablets to take. I went away and thought nothing of it and took the tablets.
The water tablets didn’t work – GP told me “you are overweight, go on a diet, that’ll sort out your legs”
My ankles did not improve, in fact they appeared bigger and I had really tender legs. I went back to my GP and this time he told me I was overweight and I needed to go on a diet and this would sort my legs out. I never thought I was overweight but I went away and my mum found a diet for me to follow, the Rosemary Conley diet. I found it very easy and lost some weight off my face and tummy but my legs didn’t decrease in size. So I went back to my GP and he said the same thing, that I was fat and a simple diet would sort it! I came away really quite upset and knew something wasn’t right but carried on with the diets, not losing much more weight, but my legs were getting bigger. I reluctantly went back to my GP who show no signs of interest and just said I was Fat, my legs were fat and I needed to eat healthier. Once again I came away upset and vowed I wouldn’t go back to my GP and to just deal with things myself.
Moving on with my life and welcoming little Alfie to our world.
The years went by and from my waist down, it had just grown in size, I really did think I was fat and there was nothing I could do. My legs were now bruising really easily, aching all the time, and extremely painful if I knocked them. In my early twenties I moved in with Paul. Paul was very sympathetic about my concerns over my legs and told me he loved me how I was. I decided then to stop with the diets and just eat healthily and try to enjoy life. I found it hard to find clothes that fitted me. All the trendy clothes were a no-no and I was stuck wearing jeans that were wide fit and baggy tops to cover up my big bum and hips. I hated going out with our friends, as I never knew what to wear. I was ever so self-conscious of what people might think. I went through my whole twenties feeling like this. In my late twenties, Paul and I decided we wanted to try for a baby, it wasn’t easy and took sometime before I fell pregnant but sadly I had a miscarriage at 8 weeks. It then took another 2 years and into my early 30’s before I fell pregnant with Alfie, it wasn’t an easy pregnancy as my pelvis kept coming out of alignment, I have never experienced pain like it before. I was monitored for gestational diabetes because I was ‘a big girl’. Fortunately, everything was okay and I welcomed Alfie into the world in December 2007 by emergency caesarean.
“Your legs Claire” - at last, someone looked at my legs properly..
Not long after having Alfie I developed some eczema on the back of one of my knees so I went to my GP, my original GP had retired and I now had a female GP. She referred me to a dermatologist at Winchester Hospital. I remember my appointment vividly, I walked into the consultant’s room and he asked me to remove my trousers and I stood there while he examined the eczema, then he calmly said to me “your legs Claire” and I thought, he we go again, he is going to say I’m fat! But he didn’t, he said “do you know why they are so big?” and when I said no, he told me that I had Lipoedema and explained what it was and said he would ask my GP to refer me to St George's to see Professor Mortimer. Relief washed over me, I was very emotional, as finally someone knew I wasn’t just fat!
A diagnosis of Lipoedema, after years of being fobbed off by my GP with the “FAT CARD”
I received my referral and was formerly diagnosed by St George's as having Lipoedema. I was told it was an extreme case and if I had received treatment sooner I wouldn’t be so advanced. This made me really angry as my GP had fobbed me off for years with the Fat card!! I continue to travel to St George's Hospital every 6 months to be measured for compression garments; this is all St George's can offer me on the NHS. The compression garments reduce the aching in my legs and keeps the fluid down but it doesn’t stop the Lipoedema progressing, it just slows it down a bit.
Finding Lipoedema Ladies and joining Slimming World, which led me to exposing my legs to the World on 'This Morning'!
In 2009, sadly Paul and I separated, but remained friends. Around this time, I found a fantastic support group online called Lipoedema ladies, a group with ladies just like me! They have been a tremendous support to me and I have made some great friends from it and hope to make many more. I continued plodding on just about coping with my pain with the help of medication from my GP, my mobility was getting worse and with a young child I found some days really hard activity-wise. A simple walk to the shop and I was in agony, my hips, knees, feet all hurt and my legs ached. I was 33, but I felt about 73 years old. Time ticked by and in June 2014 I decided to join Slimming World to see what weight, if any, I could lose. By August 2015, I had lost 8 stone!! I was amazed but from my waist down I am still large and out-of-proportion to the rest of me. During this diet time at the end of 2014 I wanted to tell my story to the world, and raise awareness of this horrible disease, so I approached a press agency that ran my story and it appeared in the main national newspapers and I was also asked to appear on This Morning on ITV. I jumped at the chance, as nervous as I would be, I just wanted to get the message across. The day went in a bit of whirl, my mum and Michelle Ellis (Chair of Lipoedema Ladies) came with me, it was truly an experience and I had great feedback from it. My story then appeared in two magazines. I reached a lot of ladies who felt exactly how I had felt back when I was aged 16/20/30 before I was diagnosed. They were so pleased they had seen my interview or read my story, it really was quite emotional knowing I had changed ladies lives.
Becoming the new "Chair of Lipoedema Ladies" and looking at Liposuction
Michelle Ellis, Trustee and Founder of Lipoedema Ladies who accompanied me to This Morning
I joined the board of Lipoedema ladies. I became involved in organising the 2015 BIG MEET, which I thoroughly enjoyed and I was asked to became Chair of Lipoedema Ladies, as Michelle is taking a step down to focus on other stuff that she has going on. I was also nominated for Juzo’s Inspirational Woman award! At the BIG MEET I was lucky enough to have a mini consultation with Mr Karri of the Karri clinic, Mr Karri carries out specialist liposuction for Lipoedema on the NHS or privately. From this small meet I arranged a proper consultation with him, where he told me I was Stage 3 Type 4 Lipoedema, which means I have Lipoedema in my legs, bum and arms and if left untreated I will lose my mobility and end up in a wheelchair. This was quite a shock to me but motivated me to come up with fundraising ideas to raise the money needed for this surgery. Surgery costs £4,200 per surgery and he told me I would need a minimum of 3-4 surgeries. I don’t have this kind of money. I have applied for funding through my GP and this has been declined, I will be appealing this. At the end of 2015, I decided to have another go at telling my story to the world and including my weight loss, but it only made the online newspapers (The Mail Online, The Sun Online.) I also was filmed telling my story for the Mail Online which is after my weight loss.
Through coverage of my story online, a TV company working for Discovery Channel approached me to appear in a series that follows people with long-term conditions and how it affects them in dating. Me being me, I thought 'hell yes, I’ll do it!' So filming began in November 2015. The TV crew took over my home and followed me on shopping trips with friends and set me up on blind dates and filmed me on them. The programme is called Too Ugly For Love? It will be on TLC Discovery Channel on Sky and Virgin starting on 13th January 2016. I’m told I won’t appear in the series until mid-February. Again, it was an amazing experience and I’m just so glad it has got my story out there and raised the awareness of Lipoedema.
My Crowdfunding Page
I have a crowdfunding page where I’m hoping to raise some money. I have also just done a raffle, which was very successful. I have a few friends running marathons and doing sponsored bike rides for me. Ill keep plugging on with the fundraising as I’m determined to get this surgery for my sake and that of my son. Lipoedema is a very cruel disease, its genetic, progressive and there is nothing we can do about it without financial assistance.
Thank you so much for reading my story and I do hope you can help me.
Claire Tickle x
Although not currently a viable self-management option for Claire or as a regular massage with a therapist, Claire experienced a DEEP OSCILLATION® massage at the Lipoedema Ladies BIG MEET 2015 which she (and others - view feedback) thoroughly enjoyed and found to be "very soothing". She also went on to win a DEEP OSCILLATION® massage prize through the Matt Barker Clinic in Winchester saying of the massage:
"I was lucky enough to win a treatment with Physiopod and had the treatment back in November. It is very relaxing and really soothing on my achey legs as they run their gloved hands really delicately and slowly over the surface of your skin, it's quite hard to explain the sensation it gives, but I will say it was a good experience. I really felt relaxed afterwards. I've not had treatments since but its not to say I won't!"
About DEEP OSCILLATION® & PhysioPod® UK Limited
DEEP OSCILLATION® is non-invasive and non-traumatic. Intermittent electrostatic impulses are delivered through vinyl gloves or applicator heads, permeating an 8 cm depth through all tissue layers including skin, sub-cutaneous fat, muscles, blood and lymph vessels, with clinically proven effects in the interstitial spaces of the connective tissue. It permeates a depth of 8cm. For more information about how it helps with Lipoedema and about self management with testimonals from Lipoedema sufferers and Practitioners, please click here
PhysioPod® UK Limited are approved NHS Suppliers and DEEP OSCILLATION® is now 'recommended' by Dr Vodder Academy International and 'The Wittlinger Lymphoedema Clinic' in Austria. PhysioPod® UK Limited have been members of MLDuk since 2010 and became Corporate Members of The British Lymphoedema Society in 2014. The therapy was exhibited at the BLS Conference 2015. They are recommended suppliers of the Acupuncture Association of Chartered Physiotherapists. and listed on Professor Timothy Watson's 'Electrotherapy On The Web' website (although not an endorsement or recommendation) as providing a 'professional service'.
Claire's legs: “Lipoedema is a medical condition that is often confused with lymphoedema. The individual with this condition may appear to be simply obese and/or to have extremely swollen legs and swollen abdomen. The condition is an uneven distribution of fat cells in the sub-cutaneous regions generally in the legs or abdomen. One major frustration of people with lipoedema is that they are accused of being simply "fat," which is absolutely not the case.” Source: http://www.tillysmidt.nl