Friday, 11 October 2013

Hello, my name is Lara and I have lipo-lymphedema. I'm 45, married with no children.

I've obviously had this all my life as anyone with lipoedema will know that it's a genetic condition. I come from a family of pear shaped women and we all thought this was just our family shape but it wasn't until I put on alot of weight very quickly and fat accumilated on my calves, shins & ankles that I really started to worry about what was wrong with my legs.

I'll make no bones about it, I was always a big child and I turned into a big adult. It never seemed fair that I didn't seem to eat anymore than anyone else but I got bigger & bigger. Exercise at that time wasn't my friend so I just guessed I put on weight because I was lazy.

One day it all got too much and I plucked up the courage to go to the Doctors and I said 'why are my legs like this? I know I'm fat but other fat people don't have legs like this'. Various Doctors were called in and prodded my legs but no-one knew. I was sent to the lymphedema clinic at Guys & St Thomas's Hospital in London, where the Consultant said he didn't think I had lymphedema but there was some research being done at St George's Hospital in Tooting on a condition called Lipoedema, a genetic fat disorder. He then went on to say he didn't believe in it and that I should lose some weight. As he must've been about 25+ stone I did think 'pot', 'kettle' & 'black'.

So nothing more happened until I seriously (again) started to lose weight with the help of a hypno-therapist. She thought if I could get some help with my funny legs then I would be happier in myself and perhaps not revert to poor eating habits. Years had passed since my joke appointment at Guys & St Thomas and with the help of the internet I found a brilliant man called Professor Peter Mortimer.

In a couple of quick emails to his secretary I had managed to secure an appointment. At that appointment he quickly diagnosed lipo-lymphedema. He was absolutely lovely. He also told me about the Hanse Klinik in Germany where I am getting my surgery done. If Professor Mortimer recommends it, it's got to be good!

Ok, so that's where I'll leave it today. I just wanted to give some background. I'm happy to answer any questions on my medical background, weight etc.

5 comments:

  1. Its always interesting to me to hear what everyone else was diagnosed with at first. From the doctors that have no idea. I was told I have Edema - not even close.Then it was Peripheral Neuropathy (ridiculous). I'm so happy to read of your journey :) Keep it comin!

    ReplyDelete
  2. Hello Julie..yes, this disorder is a nightmare! I'm going to keep posting whether or not you guys like it or not, :0)

    ReplyDelete
  3. I saw Pr Mortimer for a condition called Dercum"s Disease way back in about 2003 and when he saw me he said that I did not have it because all the ladies waiting outside had it - the big legs etc. But you can have DD and Lipodema and Lymphodema all at the same time and some of us who have had these diseases as a life long problem know what it is all about! I wish I could come and see you in Lubeck because I would love to see how you get on but after an attempt at liposuction on my arms causing massive bleeding because of the DD - I can't see anybody agreeing to do my legs or backside. I wish you all the very best though and just remember any pain is worth it in the long run!! Good luck,
    Cynthia

    ReplyDelete
  4. Hi Cynthia, thanks for your good wishes...I need as many as those as I can get!!

    I was sad to hear what Prof Mortimer said to you. My husband is a Chemist, so had some useful insight into how the scientist mind works when Prof Schmeller said the tops of my legs didn't have lipoedema. He said, 'it's their opinion. Different scientists will have differing opinions. Who is to say who is right'. My lovely, I guess Prof Mortimer got it wrong. My legs aren't as big as some ladies, but worse than others! Keep your chin up! You are right, we know ourselves when something isn't right and we usually searching for a label to put on it. Ultimately I hope there will be a time soon when there is a cure for all of us and not just a surgery.

    And pain is temporary but boots are bloody worth that pain!! Love Lara xxx

    ReplyDelete
  5. Learn about liposuction, a cosmetic surgery that removes fat cells and can improve your body's shape.click here

    ReplyDelete