Sunday, July 21, 2013

Tanning lipedema style

By Tatjana van der Krabben

The summer season is the perfect time for trivia. Of the (possible) symptoms of lipedema this one must be the most trivial of them all: legs that simply refuse to tan.


I’ve given up on a nice, even tan ages ago. I’ve given up on frying myself in direct sunlight as well. I get an uneven tan anyway due to my love of snorkeling.


I get a seriously tanned back and neck and the rest stays behind. Theoretically the back of my legs should be very tanned, too, with all that snorkeling.
As you can see on this picture that is not the case. Empirically that one doesn’t count 100%. I apply more sunscreen on my legs and my back tends to get neglected. Even though I also often snorkel wearing a t-shirt, both back and legs are not treated identically.
So this vacation I did a little test. Yes, I do have hobbies and no, I haven’t lost it. Just being curious! I applied sunscreen very evenly on the arms and legs, feet and hands included. Never just forearms or forgetting the hands or feet. I wore the same Birkenstock slippers all vacation (silver goes with everything and the tropic vibe got to me) and mostly went sleeveless and on the beach bikini and tankini. I used no wrap of some sort to cover myself on the beach. I never once bothered to wear stockings. Yes, I cheated. I can, provided I swim twice a day. So all got exposed quite evenly.


This is the result after 12 days:

My feet tan well and the legs stay behind. The combo looks like I wore pants all the time and only my feet were seeing any daylight. It does add up: feet are unaffected by lipedema. They do suffer with the excess weight and the legs being pushed outward, but technically the lipedema ends at the ankle. That artificial looking tan line is a bit lower than that, but hey.

The angle of this picture has not influenced the appearance. If anything, it makes the difference less obvious than it actually is. It really looks like I have a tan line across my feet. A tan line that has got nothing to do with the way my legs and feet were exposed to the sun, sunscreen or clothes. Theoretically that tan line should not exist.

The effect in the arms is a bit more subtle. The hands are tanned the most. The forearms are also tanned, but less so. The upper arms, which are affected the most by lipedema also had most trouble getting tanned. The first mark is at my wrist, the second mark just above my elbow. Unfortunately, the picture I tried to take ended up a bit too bright and doesn't really add anything here. According to this picture nothing got tanned and truthfully it wasn't THAT bad. Back to the 2 tan lines on my arms: neither can be explained through my wardrobe and/or blocked sunlight.

I came up with it on vacation, remembering some posts on forum and my own pasty white post-vacation legs in the past and didn’t look into the theory until afterwards. Patient comments on forum aside, I found two references: S. Evans (2013) Lipoedema: the first UK patient survey  (http://www.lipoedema.co.uk/wp-content/uploads/2013/05/BJCN_CO_lipoedema.pdf), and S. Lüthi et al (2012). Das dicke Bein (Not publicly available). Skin tone as a symptom more so gets a mention in diagnosing lymphedema.

It may be a trivial symptom in the scheme of things, but it’s yet another symptom that is largely being ignored. By now many more symptoms and possible coinciding symptoms are known, such as frail capillaries, hypermobility and vitamin deficiencies. With most doctors only the fat and edema get serious attention, but that leaves a lot of room for a different interpretation. More and better knowledge of the symptoms is vital. Or else getting diagnosed remains a game of medical Sudoku with your primary and/or may leave you with untreated additional medical issues like a vitamin B or D deficiency. Suddenly that pale skin of ours, cold to the touch, is not so trivial anymore.