Dear doctor, can I make a wish?

By Tatjana van der Krabben

It’s June. That means it’s Lipedema Awareness Month. For me that’s a time to see how far we’ve come and where we still need to get to. I’m greedy and needy, I know. I want research, the kind that helps us learn about what lipedema exactly is. I want more informed doctors, a better prognosis for patients, early detection all around, more effective treatment options and better access to treatments.
I know that takes time, so that would be mostly for the next generation, but I’ll take it. I want better coverage for treatments by health insurance companies, too. Because, frankly, this unproven thing is getting kinda old. And so is that assumption that it’s about cosmetic issues. We’re not that far back in the lipedema dark ages anymore. Seriously, read up, people. And while I’m at: treating us with lymphedema and obesity protocols should equally be abandoned as a thing of the lipedema dark ages. Come on, give me a little renaissance here, doc.

But for all of that to happen I would need to make another wish, dear doctor. I feel it’s essential. So may I squeeze in one more request? Say what? I’ll take that as a yes, if you don’t mind.

Lip means fat and edema means fluid. I know every condition needs to get a name and this is what we got. But that shouldn’t mean we can’t look beyond the semantics of this thing, right? Because despite the fact more symptoms have been brought forward and get a mention here and there in case-based literature, most attention still goes to either the fat or the edema we carry around. We even have doctors specializing in treating the one or the other, even though we deal with both symptoms at the same time. And some.

Lipedema has more symptoms that get frightfully little attention. I can’t give you a list, because there is no acknowledged comprehensive list. There is no consensus on which suggested symptoms exactly are part of lipedema and which are not. Isn’t that a little weird 70+ years after acknowledging the existence of lipedema? Come again? I’ll take that one as a yes, too.

We need this consensus. Badly. When only a handful of specialists are aware muscle weakness is a thing with lipedema and bother to look into reactivating the patient safely, most of us strike out. Leaving us either with taking this symptom for granted or forcing us to work on remobilization without professional care and input.
Our worn knees don’t get replaced or treated otherwise, ‘because we’re too young’ or ‘too fat’, completely ignoring the lipedema component in the process and the fact that they are condemning us to further loss of mobility with this verdict.
I’ve seen specialists argue low levels or malabsorption of certain vitamins and minerals is a typical lipedema-thing we should get checked out after diagnosis and other specialists calling it pretty much a myth and the occurrences of malabsorption among patients a coincidence.
I’ve heard specialists argue we should stay clear of birth control with hormones or hormone replacement therapy as it would aggravate lipedema, and others, when asked, saying that’s not proven nor did they ever notice anything like that in their patients.

These are only some of the dilemma’s and hurdles we face. We’re talking quality of life here. Some grip on our prognosis. A chance of a better prognosis, if we manage to get things right, best as possible. Do what is right for our lipedema and, yes please, do it with proper, covered medical help, instead of DIY’ing ourselves through this. That all starts with a better understanding of lipedema, and trust me, that goes a whole lot further than ‘fat’ and ‘fluid’. True: you can’t whip up valid and substantial research. I understand, but there IS data to give you a head start. How about that.

So can I ask you something, dear doctor? Just have a look at the results of the surveys that patient organizations have compiled and spread among their members. There’s a goldmine worth of information and leads there. Just waiting to be used, researched and, if applicable, acknowledged.

There have been surveys by Lipoedema UK and the LIPV (partly in Dutch), among other.

Come on, doctor, make my month.