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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:
