Member Stories

Glimmer of Hope

I just wanted to say how relieved I feel to have discovered Lipoedema UK. I actually feel a glimmer of hope for the first time since my lipoedema was diagnosed.

I had breast cancer 5 years ago and have undergone two operations, chemotherapy and radiotherapy and am still having regular check ups. However, although having cancer is obviously pretty traumatic, for me,  it pales into insignificance compared to the daily trauma of living with lipoedema.

When I found my breast lump I was seen by a consultant within days, operated on within weeks, and the whole treatment process ran like a well-oiled machine. The health profession knows what cancer is and how to deal with it. I have yet to find a medical practitioner who knows anything at all about lipoedema, apart from Prof. Mortimer. When my lipoedema was diagnosed, after seeing several different doctors and therapists, and a long wait to see a consultant, I felt a sense of total hopelessness because it seemed nothing could be done and there was no research into this awful condition.  I feel ugly and embarrassed by my lipoedema in a way that I never felt about having a disfigured breast or losing my hair, I find it more depressing and isolating on a daily basis than I did having cancer.

So I am just so pleased that  Lipoedema UK exists and I feel a tiny bit hopeful and less alone with my Lipoedema.

So thank you!

Annie

 My Lipoedema Legs

I have only recently discovered that I have Lipoedema. Initially I was shocked and I didn’t want to know anything about it. I then became angry, so angry that I had believed for 40 years that I was a greedy, fat person who had created such large and ugly legs. Large, lumpy legs that in turn have created a major negative impact on my self esteem, my confidence, my health and my life choices.

I was told by a consultant at St Thomas’s hospital in my early teens that my ‘large and lumpy’ legs were just puppy fat and they would go ‘back to normal’ after puberty. They never did and it wasn’t long before I was trialling every diet invented in my attempts to change the appearance of my legs. I ended up ‘dieting’ for the next 30 years and in 2010 I weighed in at my heaviest. I had severe foot, hip and knee pain and was diagnosed with Fibromyalgia.

I am a Leadership Trainer and Coach. I was so very low and felt a fraud, asking myself how I was able to help others achieve their goals as a coach, but despite all my efforts ‘dieting’ I was unable to change the appearance of my legs and instead was using food to comfort myself from the negative effects they were creating in so many ways.

I stopped dieting and started putting into practice various creative tools and techniques I have learnt and practiced as a coach, on myself. I went on to release 5.5 stone easily and effortlessly over the next 11 months. Weight, which I am pleased to report, has remained off over the last five years, albeit the appearance of my legs had not changed.

With a ‘perfect’ BMI I went to see my GP who has always been very aware of the issue with my legs and unhealthy relationship with food. I asked her what else I could do to change the size and look of my legs. She told me it was just fat and wrote down the name of a plastic surgeon who might be able to help me, at my own cost.

This wasn’t an option for me at that time and I decided to try to accept ‘my legs’ and attempt to live a happier life.

This situation remained until my eldest daughter happened to watch a YouTube video about a girl with Lipoedema, about 4 months ago. ‘Mum’ she proclaimed, ‘This is your story and these are your legs’!

Since that fateful moment, I have attended the Lipoedema UK Conference at short notice and was subsequently diagnosed with Lipoedema a month later. I have been back to see my Doctor with my Lipoedema UK’s GP Pack and have arranged to meet her to discuss my situation in more detail. I have met Glen Brice at St George’s with both my girls, and have been the first to sign up for their genetic research program.

I have started to make some nutritional changes, undertake specific exercises and wear compressions. There are more actions I have chosen to commit to doing, however I am conscious to not attempt too much in one go and to be kind to myself.

It has taken awhile for me to accept this diagnosis and I am curious as to where this journey is going to take me. Right now I am resolved to do all I can to help myself, my daughters, raise awareness of Lipoedema and support other women affected by this disease in any way I can.

Sandra

 

My Journey: Travel to the Lipoedema UK Conference 2014

Travel with Lipoedema can be very challenging.

The main reason I was travelling was to attend the Lipoedema UK 2014 AGM and conference, in London. It was a bit scary for me as I hadn’t been into Central London since I was a child, and certainly had never had to find my way about on a mobility scooter.

My travel arrangements from Belfast to the London based 2014 conference went seamlessly thanks to Easyjet assisted travel, train assistance, and Lipoedema UK Chair Sharie Fetzer’s guidance and help.

I had no idea how I would be accepted by the people I would meet. Would it be very impersonal or would people be friendly? These were all questions running through my mind as I prepared to go there. I also hoped to meet two professors, specialists in their particular medical fields..

Everywhere I turned there was always someone to help me and the hotel also arranged the hire of a mobility scooter.

I arrived on the Friday, I had time to unpack and explore my surroundings before the conference started. Later I received a warm welcome from some of the organisers of the group www.lipoedema.co.uk and they included me at dinner. I felt relaxed and at ease already!

Dr Dirk Pilat and Dr Sarah Pledger were introduced. Dr Pilat is the medical director for E-learning at the Royal College of GPs (RCGP). The good news is that there is a FREE E-Learning course for all GPs to learn about Lipodema. No GP can now say, “There’s no such thing as Lipodema, you are just eating too much so go and diet!”

However, the responsibility of spreading the word about Lipodema lies with each member who can take the information to their doctor and encourage them to participate in the elearning course. What an opportunity to educate our doctors!

The other good news is that the Royal College of Nursing has also endorsed the course and Lipoedema UK has registered charity status which also increases their credibility and allows us to fundraise for them!

Prominent specialist speakers included, Prof. Wilfred Schmeller (returning for 2016!) from Hanse-Klinik in Germany, who has pioneered the work of tumescent local anaesthesia methods using vibrating microcannulas in liposuction for Lipoedema sufferers, a much safer and more effective treatment of liposuction for Lipodoema.

Later in the day I was most fortunate to have a private consultation with Prof. Schmeller who reaffirmed that I had Lipodema and that I was not unfortunately a suitable candidate for his treatment of liposuction due to my heart and the condition of my skin. Unfortunately, I reckon I’ve had too many birthdays! I appreciated his honesty and kindness and I was honoured to have met him.

Prof Peter Mortimer MD.FRCP.(London) has pioneered the treatment of lymphovascular medicine. He spoke on the Lipodema problem itself and has been foremost in the UK in diagnosing and advising patients with it and lympho-related diseases, as well as bringing Lipoedema, this little known adipose tissue disease, to the forefront of the medical world. He touched on the genetic basis and causal genes issue, which he said allowed for a better basis in the understanding and treatment of the condition.

Denise Hardy presented on compression bandaging and Lipoedema management and the leading manufacturers of compression hosiery garments, Sigvaris, Activa, Haddenham Healthcare and Solidea, were represented and were helpful in explaining and demonstrating their products with advice on how to overcome some of the difficulties of wearing them.

Arm chair exercises and a talk given by Glenda Baum helped to keep us from dozing off after lunch! and on the Sunday Cynthia Holden gave an amusing and stimulating mini workshop on self motivation and respect.

Denise Hardy and Chris Wise, who are Nurse Advisors to Lipoedema UK, were on hand on both Saturday and Sunday to advise on compression garments, they were very helpful and I had meant to ask Denise about the Kinesio taping which she touched on in her presentation as I’d had this done in Greece. However there was so much to take in and understand, interspersed between coffee breaks, and a lovely low fat lunch provided by Lipoedema UK.

I should mention that the fees for the conference were very reasonable and I felt that it was such a forward looking organisation, as to offer as best I could, my help to try to raise awareness and funding. Obviously such conferences are not cheap to run. When I returned home I took some Lipoedema UK information packs to a group of fellow sufferers to Portadown in NI. They were excited to receive the information and especially the E-Learning cards to give to their doctors.

I did have some amazing treatment for pain and muscular problems with the PhysioPod UK Ltd team, Julie and Mary. They were giving free demonstrations of their machine which penetrates 8 cms into the body with deep vibrating oscillation. Being a bit sceptical about this I hesitated but then decided to go forward for a session of treatment and found immediate relief from my neck and back pain. I was truly amazed at the results. They were incredible but the good thing is that they have actually had some lasting effect!

Whilst there the atmosphere of the conference was warm and friendly. I met a lovely lady and made a new friend called Kim and we found we had much in common and enjoyed Sunday lunch together.

As I was able to attend all these events on my hired scooter, it worked out very well. All I can add is that if you think you may have Lipodema symptoms, join Lipoedema UK! It is going to be your life saver!

Liz

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Personal stories can be inspiring, enlightening, and enjoyable. If you would like to share your member story to inspire others, please email it in word format to info@lipoedema.co.uk. We reserve the right to edit for clarity and brevity.