Lipedema was discovered 75 years ago. I would like to say we’ve come a
long way, but that wouldn’t be entirely true. Still few doctors doctors are
informed, few doctors are informed about treatment options, few clinical trials
have been conducted and the causes are unknown. Even the acknowledged
conservative treatment options, like compression, manual lymphatic drainage,
connective tissue massage and liposuction are not necessarily covered.
I can’t complain myself: in the Netherlands I at least get my
compression and manual lymphatic drainage covered. But the liposuction came out
of pocket. The gym at the local physical therapist’s practice, where I prefer
to train because they at least know a little bit about lipedema and plenty
about adjusted, safe workout programs is also not covered. Lipedema is ‘not on
the list’. Now if I got bigger I
could get it through health insurance on grounds of obesity. Wouldn’t we want
to prevent that? Then there’s the recommendation to eat organic, unprocessed, fresh foods as much as possible. Gluten-free and sugar-free. Although this hasn’t been researched, it has gained support over time and based on personal experience no argument here on the scientific evidence part. But that sort of food is more costly and often requires additional travel to farms or larger towns to even get it. That’s more cost. The same applies to the various supplements, either generally recommended or based on blood tests. Even when found through bloodwork this doesn’t necessarily imply the needed supplements are covered.
Thankfully I was able to come up with the money to exercise at the
preferred place, can get a lot of organic produce, in part because of my in-laws’
vegetable patch where they never ever spray. I also got liposuction when I felt
I needed it. My nest egg was gone, but at least I got to have the treatment. I
benefitted. I need less of the covered care. Some sweet deal for my health
insurance. I can work more and disability is not an issue for years to come -
you’re welcome, government.
But what if you don’t have the sort of income to make that happen or a
nest egg? What if you have been muddling through life with this unrecognized
‘thing’ that got your clothes size to go up and your energy levels to go down?
You cut back on your work hours or changed jobs to match your energy levels.
Your income decreased along the way.
So what did 75 years of ‘knowledge’ about lipedema get us? If you can
pay for it, you can advance your health. Of course there are some low budget
things you can do and once you figure out a safe workout routine you could do
it from home, at the park or at a more affordable gym. Maybe you could grow
some veg yourself? Let’s face it: liposuction doesn’t cure lipedema, but it
sure is the fastest way to get a lot of improvement. But there’s no clever DIY
alternative to liposuction. Saving up for liposuction sadly is an illusion for
many. So now we see more and more attempts at crowdfunding to make liposuction
possible.
Our valued fellow blogger Christina Routon is facing the same challenge.
She has worked on her diet, her workout regime and works on reducing stress.
Her body however, is not playing nice and is telling her she needs to take
another step if she wants to see any more improvement. She has also started a
crowdfunding page to work towards liposuction, but it’s hard. I see many
similar requests on social media, which also implies a weird type of
‘competition’. The fact it has come to this saddens me. We need medical
coverage and affordable care for lipedema. And we need it bad.
Christina is a hard worker with a creative soul and a big heart. I hope
she makes it.
More information about Christina’s crowdfunding efforts:http://www.gofundme.com/lipedema-surgery
http://creativelifeenterprises.com/fight-lipedema-t-shirt-campaign/
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