Odd as it sounds, I am grateful for having a medical condition with a name. Once a syndrome, a condition, a disease has a name, it becomes real. You learn how to treat it, how to live with it, if there is a cure or a way to alleviate or manage it.
In my case, it's primary lymphedema -- most likely hereditary, since a cousin has the same condition, and she mentioned that my great-grandmother may have had it as well. It requires lifelong management, like so many other chronic conditions, but it's a treatment plan that I can easily do.
Right now, I'm going for Manual Lymphatic Drainage massages every 2 weeks. Each day, I wear medical level support hose each day. I wear an additional pair of lighter support knee-highs over those. When I'm not wearing those, I wrap my legs with short-stretch compression bandages and foam padding to further assist in the compression process. Is it time-consuming to do that? Yes. Is it worth it? Absolutely. Since beginning the MLD, my legs have shrunk dramatically.
I have learned how to properly care for my skin on the affected limbs. Because of the nature of the condition, I'm at greater risk for skin infections from cuts, abrasions, even mosquito bites. I had an irritated spot at my ankle; it was probably caused by the skin getting caught in the fold of the hosiery. It took about 3 weeks to heal - waaaaay longer than it should have under normal conditions. But it healed, with only a small localized area that became infected.
It has a name. It has a treatment regimen. I pray for all those out there with unnamed conditions and unknown treatments ...... that someday, they too will know its name.
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