The following was submitted by Joshua D. Morrow (@lymphedema.dude.joshua):
What has your experience been with lymphedema?
I was 23 when I developed lymphedema. I thought I’d sprained my left ankle playing basketball. I would spend 3 weeks trying to care for it like it was sprained with the swelling getting worse. By the time I went to see a doctor my leg was swollen from my knee down to my toes.
It took a couple months of doctor visits with X-rays and other tests. I was recommended to a specialty clinic at the UAMS Medical Center In Little Rock. Once I was there I saw a endocrinologist. It took her less then 10 minutes to diagnose me with primary lymphedema. I was glad to know what I had; unfortunately, I wasn’t told much on taking care of it. I was told things weren’t going to go away, I would have to wear a compression garment from now on to keep it elevated when not up on it.
After my diagnosis, I went through many years of self denial and depression. I hid from the world and lost touch with most of my friends during this time.
I hid from the world and lost touch with most of my friends during this time.– Joshua D. Morrow
I stopped doing many things used love to doing. At the time was a skateboarder and rode BMX bikes all the time; I quit both of them.
Now things are very different. I’m pretty open about having lymphedema. No longer hide with baggy pants or avoiding going out in public.
Now things are very different. I’m pretty open about having lymphedema. No longer hide with baggy pants or avoiding going out in public.– Joshua D. Morrow
How does lymphedema impact your everyday life/routine? How does it impact your career or activities?
I don’t think about it all the time; some days though I can’t avoid it. Like a lot of lymphedema suffers I experience pain in my lower legs. Most of the time it’s bearable I’ve gotten use to it then there’s days where the pain is severe. These are the days I hate pain is a huge drain on me; it’s all I can concentrate on. I’m not very productive on these days.
I wear OTC compression every day living in southern U.S. the summers get really hot wearing them that time of year is rather uncomfortable. Doing things outdoors is very limited by the heat.
Doing things outdoors is very limited by the heat.– Joshua D. Morrow
How do you feel you fit in with the lymphedema community?
I personally feel that I fit in pretty well with the lymphedema. Most because I’ve become pretty outspoken about having lymphedema.
What kind of treatment do you undergo for your condition?
Besides wearing over the counter compression garments self treatment. I’m currently not undergoing any treatment.
What do you wish others knew about your condition?
This condition isn’t cause by being overweight and if you just lose the weight it would go away. Yeah it doesn’t work like that.
This condition isn’t cause by being overweight and if you just lose the weight it would go away. Yeah it doesn’t work like that.– Joshua D. Morrow
You can come up to me and ask about my legs I’m willing to talk to you about it.
How often do you discuss your condition with those outside of the lymphedema community, if at all?
I have discussed it outside of the community but not as often as I would like.
What would you like to see for lymphedema within the next few years?
A cure is the brass ring of course but I feel that’s still some time before we have that. More realistically, I’d like to see more research and more accurate representation in the media. I feel it hasn’t reflected the community in an accurate way in what we seen so far.
I’d like to see more research and more accurate representation in the media. I feel it hasn’t reflected the community in an accurate way in what we seen so far.– Joshua D. Morrow
Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?
I have been involved with a few fundraising efforts. To date though all involvement has been online I’m hoping to get more in life involved though.
How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?
The community is great. We are doing a good job of getting awareness spread. I, however, feel its focus is too much on breast cancer related lymphedema. Other voices get drowned out when trying to raise awareness and support.
Other voices get drowned out when trying to raise awareness and support.– Joshua D. Morrow