Please sign this petition re the lack of care for lipoedema patients

[bringonthecrumpets]

Lipoedema is a chronic condition with no cure and the only treatment is surgery. NHS won’t cover, neither will any private insurance.

https://petition.parliament.uk/petitions/758164?fbclid=IwdGRjcAQepQpleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEeVIB3zqR2hsGOwlFAOuDPGlZ0a-FKGxfTNktvatsehXSkVqkl0zf2LOm15_Q_aem_YLsvXZex_AstbEsCXG-W1g

Done

Done. I have spent thousands travelling to Germany so I can retain my mobility, and by that I mean my ability to walk up stairs. You cannot out -diet or out-train lipoedema. I should have been diagnosed at 13, not left to rot until my forties and told I should "just eat less and move more".

This is the thing. So many of us are in the same boat. And it’s worse, I’ve now found out the NHS won’t even support you after the surgery because “you have gone private” so there are people struggling to get basic wound care. It’s mental. Please share on all SM if you can. Thanks.

I’ve signed xx

Done. Thank you.

Thank you both. Keep sharing and keep signing!

Bumping again for the morning crew. We are up to almost 2500 from yesterday. Still hoping we will get to 10k.

seriously?! that is shocking 😡signed

I have lipedema. I am in my mid 50s and only realised that's what had been going on all these years a couple of years ago. I used to diet myself down to a size 10 but still have fat legs that seemed to carry pouches of fat and water and bruise if you looked at them.

About a year ago, I showed my legs to my GP and asked if I was right. Was it lipedema? "Yes. But you can improve them with exercise".

They don't even understand it.

Signed.

Pretty much snap, Piknik.

(For the ‘muggles’ reading this, no amount of dieting and exercising will make lipoedema vanish. But 11% of women have it. It is like cellulite on steroids).

Done . Thank you so much for doing this! I've always had "big legs" and remember being puzzled as to why mine were so different from my friends' legs.
I am 72 and haven't worn a skirt for years! I was finally diagnosed 2 years ago by a lymphoedema nurse.

Done

done, thanks for raising this. Im pretty certain my mother is stage 4 and its in most of my maternal line

Done, I also went to Germany and paid £20k for surgery.

I am also booked in for surgery in Europe. Having to sell my car to be able to pay for it as even my private insurance rejected my claim saying it’s one of the exclusions of the policy. It really is shocking.
The irony is that if left untreated, it generally progresses to lymphoedema and, you’ve guessed it, the nhs will cover it.

Thank you all for signing. Please share on SM if you can. We have until August to get to 10k.

Done - my mum has it and is a size 6, but still struggled with pain and mobility because of it. My maternal grandmother also had it so badly she struggled to walk. My mum had to pay for surgery abroad, it’s so unfair.

signed

Signed and shared

Thank you. We are close to 3k now.

Morning bump

Bumping again. Please sign. Getting close to 4000 now! Thank you 😍

No I don’t support offering surgery for lipoedema despite knowing lots about it.

The appropriate treatment is compression hosiery, exercise and weight management . It has been shown the mounjaro makes a huge difference to lipoedema sufferers.

It’s just not a priority for the NHS.

Signed.

Mounjaro is not even available for those who need it on the NHS unless you have several other major health conditions and the specialist weight management services a) see you, and b) deign to prescribe it!

Signed.
Like many (most) other women's health issues, NHS provision is extremely lacking for this condition