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MY LIFE WITH LYMPHEDEMA

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Pat O'Connor

I was born with primary lymphedema (Milroy's). My lymphedema started almost from the time I was born. Taken from doctor to doctor, it wasn't until I was 6 years old that they figured out I had lymphedema.

My mother shows a mild form of it in her feet and ankles. Her mom (my grandmother) had a very swollen left leg. My lymphedema is mostly bilateral. My right leg is a stage 3 and my left leg is a very late stage four. Also, since I was a teen I have mild swelling in my right hand. This year, after having a pic line in my left arm, it now has a slight swelling.

During the 1960's I tried the Jobst Compression machine therapy (didn't work). Starting from 1969 through 1973 I had a series of experimental surgeries. A procedure called (at that time) the Buck's procedure was done in 1969 (it worked well). From 1971 - 1973 I had a series of three Thompson's Procedures.

In this procedure, the leg was debulked and then a flap of skin was actually sewed into the leg muscle. The theory was that this would be a "wick" that would draw fluids into the deeper muscle lymphatics.

After 3 nine hours surgeries and many skin grafts, the verdict is still out on whether or not those surgeries did any good.

I did fairly well with lymphedema (except for those horrid cellulitus infections) until about 1995. Things changed dramatically as I was diagnosed with mixed B-cell lymphoma (Friday, Jan. 13, 1995); leukopenia in 1997 ( my immune system had collapsed) and lymphoplasmacytic lymphoma in 2000.

There has been much discussion revolving around that fact that LE may have caused all this. My oncologist and 3 of the main infectious disease doctors seem to think so.

Honestly, this past year has been the toughest year of my life as it seems the dam has broken and everything seems to be overwhelming me, physically and emotionally. it has been a year of hospitalizations for cellulitus (which has never completely gone away) and a year when the pain level has soared. I seem to be getting hit things faster than my body can recover.

But, it has also been a wonderful year for becoming involved with several on-line support groups, meeting an absolutely wonderful family of LE'ers. I can never say enough about how much my new family and friends have meant to me.

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Five Generations of Milroy's Disease (Milroy's Syndrome)

Recently, I have received mails regarding the chance of passing on hereditary lymphedema to children. I especially want to thank Jen too, for her recent post. Though I would put a "quickie" article showing how the lymphedema gene has been transferred through my family.

maternal grandmother (1881-1963) - generation one
lymphedema of left leg had 9 children without further complications of the lymphedema
as far as we know, she was the only one in her generation


mother (1927 - ) - generation two
mild lymphedema in both feet and ankles
5 children with no further lymphedema complications
temporary increase during pregnancy only

one of her generation with lymphedema

my generation (Pat) - generation three
from birth experience bilateral leg lymphedema
mild lymphedema of right hand starting as a teenager
mild/moderate lymphedema of left arm starting in 2003
one cousin with lymphedema, started in his late fifties
there are about 20 of us in my generation, my sister also has lymphedema of the left leg.


my children's generation - generation four
don't know how many there are - too many to keep track of
no lymphedema present in anyone
my two children show no signs of any lymphatic disorder


our children's children
don't know exact count - we are prolific
no lymphedema present in anyone


Conclusion:

While it is possible to pass on the lymphedema gene, it does not automatically mean that offspring will exhibit or present with active lymphedema. In our family as the generations continue, it seems the lymphedema gene gets pushed further and further in recession.

For further info on lymphedema and genetics, I urge people to go to the University of Pittsburg sites below: