Updates
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Pamela Smith → Lymphedema Community Staff: Does anyone out there have Primary Lymphedema (Milroy's Disease)?
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Pamela Smith → Lymphedema Community Staff: Hello from Australia and thank you for welcoming me aboard :-)
I and other members of my family have Primary Lymphedema (Milroys Disease). Some have passed away and those of us still living are in our latter years. I also have Atrial Fibrillation... moreHello from Australia and thank you for welcoming me aboard :-)
I and other members of my family have Primary Lymphedema (Milroys Disease). Some have passed away and those of us still living are in our latter years. I also have Atrial Fibrillation and Sleep Apnoea and have been incontinent since I was pregnant with my first child, at 20 years of age. I'll be 70 next birthday.
I must admit that something which I still find unsettling, is the ignorance shown by the medical profession here in Australia, concerning Lymphedema. The latest incidence was a couple of days ago when I went to a Respiratory Specialist and he told me to halve everything I ate. Of course I'll have a go and see if it makes a difference, but it did upset me, because I could tell he knew nothing much about Lymphedema and after all, it wasn't even his field of expertise. I've been trying all sorts of eating regimes and on the whole, try to eat healthy - sugar free, gluten free..... Being older, I'm not as active as I used to be and I don't eat as much as I used to when I was younger. I am also human and like anyone else, when I go into the city, I like to have a treat, same as a lot of people. We live in the country (kangaroos and wallabies all around).
I have had Primary Lymphedema from head to toe all my life. My arms bulge out from my sides, so they don't hang down flat and I can't buy clothes with sleeves, because even the large sizes don't fit, etc. etc. My legs and arms all tend to get very tight and ache at times. My arms get in the way and they constantly bump into things or knock things over - very embarrassing. I dislike photos of myself showing anything more than head and shoulders.
Someone was asking if anyone else with Lymphedema has had kidney problems. I had a bad case of Nephritis when I was 16 years old and nearly died. I blew up all over, almost overnight, with excruciating kidney pain, fluid surrounding my heart and bubbling in my throat. As you can see, I survived and am still here 53 years later to tell the story. Whether that was a trigger for the Lymphedema to manifest more dramatically, I do not know for sure, but have often wondered.
I can say my weight struggle began when I was very young and my parents made a 'thing' of shaming me and singled me out even at five or six years of age - despite the fact that I ate the same as the other children in the family. Into the teenage years, one of my sisters also manifested Lymphedema and is now worse than I am.
Well, that's me. My apologies for the lengthy introduction, but I just wanted to give you a run-down on where I'm at. I have a wonderful husband and a loving Heavenly Father to watch over me, so I consider myself blessed.
Thanks for this opportunity. If you want to tell me your story, or ask me anything, I'd love to hear from you.
Pam
(Lympho Chick) less
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Pamela Smith has just joined the community. Say hello!
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Info
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Classification
Patient
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Gender
Female
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Last Name
Smith
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First Name
Pamela
