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Lipoedema Sufferers

Posted , 3 users are following.

glynis28541
glynis28541

I would like to hear about other Lipoedema Sufferers as there doesn't seem to be much help out there.

1 like, 3 replies

3 Replies

  • cynthia89958
    cynthia89958 glynis28541

    Posted

    Hi, This is quite old so not sure if you still log in. There are Facebook groups and support groups in the UK, if you are not aware of them already. Unfortunately, treament is few and far between and different depending where you live etc. I found out I had this in my 50s although I suspected from much younger but drs had never heard of it.

    I have bad knees and hips as a result and it has reduced mobility for me somewhat now. Also cannot wear skirts, boots, glam shoes due to this condition. The worst thing was finding out is may be genetic and it appears I passed this on to my daughters. I feel so sad about that, but hope some better treatment or a cure will be found before long, they have already grown up with some disadvantages through this. Prople including drs think it is our own fault and we either eat badly, or are lazy and don't exercise. Yet these make little difference and our BMI seems disproportionally high as the legs collect fluid and fat despite a slimmer frame body.

    In this world where appearances seem to be everything, it is so hard to have this, it affects your confidence totally and also it limits long term health and mobility, so treatment should be available - at the moment the special liposuction needed is only on private not NHS.

    • glynis28541
      glynis28541 cynthia89958

      Posted

      Hi Cynthia

      Thank you for responding to me.

      i have recently been diagnosed with Lipoedema after being told for decades that it was Lymphodema. I went onto Jeremy Kyle Emergency Room, the show was aired today at 2pm on ITV if you have catch up you can see how bad my legs are. The only hope for me is surgery I am trying to find out how to appeal to have the surgery done.

    • cynthia89958
      cynthia89958 glynis28541

      Posted

      Hi Glynis, I will try to watch this on catch up! Hope you feel better for at least having it confirmed. Good luck seeking funding, hope you are successful - its disgraceful that it is not more readily available x
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