March is Lymphedema Awareness Month and I really wish I knew how to make people aware of lymphedema. I am sure my Facebook friends are sick of hearing about it already but I am hoping some people will mention it to other people and so on and so on…
I spent most of my life rarely mentioning Lymphedema. It was just something that I lived with. I have Primary Lymphedema and that means I got it through genetics (my father had it). I did not have cancer treatments, I did not have any major trauma and it is not because I am too fat (as a lot of television shows seem to suggest is the only cause for lymphedema). 4 of my sisters and 2 of my brothers have it as well and everyone seems to have it to varying degrees. Mine is considered the 2nd worst in my family. In my family we get it at puberty (well, we are born with it but we don’t really see it until puberty). Growing up, our doctor just called it having the Bellows (my maiden name) legs and we were not treated for it at all.
I always felt that having Primary Lymphedema was much better than having Secondary Lymphedema because at least I knew that there was a good chance that I had it so it was not a surprise when I did plus I had other family members who I could talk to about it. I can’t imagine how hard it must be for someone surviving cancer and then getting lymphedema because of the cancer treatments. Thankfully the awareness of this type of lymphedema has greatly increased and cancer patients seem to be getting a lot more info and help with it than they used to.
I posted a photo of my legs on Facebook tonight as part of my Lymphedema Awareness Campaign. Until this past year very few people had ever seen my legs. This year I have showed them a lot. Yes, I wear long dresses and skirts so my legs are not the first thing people notice about me but if anyone asks me about Lymphedema I just show them my legs. I have seen a lot worst cases of Lymphedema than mine and I have seen a lot better ones too (and that is just in my own family lol).
Why is Lymphedema Awareness so important to me??? I am not sure. Yes, I have it but will awareness make a difference? I hope it will. I would love to go to a doctor and not have to explain it to them. I would love to wear a bathing suit or a shorter dress and not have people gasp at the size of my legs and make rude comments about them. I would love for people to understand that I know what I can and can not do and for them not to limit me because they feel that I can not do something. I would love for the insurance companies to understand that they should pay for treatment because some people have had amazing results with treatment especially if they start early (I paid thousands of dollars out of my own pocket and was reimbursed $250 from my insurance company. My MLD treatment was not successful because I didn’t do it early enough and now my legs have too many crevices for the stockings to work and I felt that I couldn’t have a real life if I had to be bandaged from my toes to my belly 24/7). Maybe if the insurance would have paid then I would have gotten my treatment early enough to work but I guess I will never know and there is always hope that something will work for me. New treatments are being discovered.
I just hope that eventually, with Lymphedema Awareness, the lives of people with Lymphedema will be better….
P.S. To any doctors out there: Yes it hurts. Some days are a lot worst than others (Many doctors believe that Lymphedema does not hurt…I have met them)