Yeah, I know that I've had
this blog for a bit (since I started up with gmail) and I've only got the one
post with the scarf (which has been finished for quite some time). And it
got me thinking the other day, I should make this blog about living with my KTS
(Klippel-Trenaunay Syndrome)/lymphedema. So here goes!
My
official diagnosis is KTS. I've had this since I was born, but it didn't
manifest itself until I was 4, when I twisted my ankle and the swelling never
went down. So I've had this for all of 23yrs.
Here
are some facts on KTS:
What
is Klippel-Trenaunay syndrome?
Klippel-Trenaunay
syndrome is a condition that affects the development of blood vessels, soft
tissues, and bones. The disorder has three characteristic features: a red
birthmark called a port-wine stain, abnormal overgrowth of soft tissues and
bones, and vein malformations.
Most
people with Klippel-Trenaunay syndrome are born with a port-wine stain. This
type of birthmark is caused by swelling of small blood vessels near the surface
of the skin. Port-wine stains are typically flat and can vary from pale pink to
deep maroon in color. In people with Klippel-Trenaunay syndrome, the port-wine
stain usually covers part of one limb. The affected area may become lighter or
darker with age. Occasionally, port-wine stains develop small red blisters that
break open and bleed easily.
Klippel-Trenaunay
syndrome is also associated with overgrowth of bones and soft tissues beginning
in infancy. Usually this abnormal growth is limited to one limb, most often one
leg. However, overgrowth can also affect the arms or, rarely, the trunk. The
abnormal growth can cause pain, a feeling of heaviness, and reduced movement in
the affected area. If the overgrowth causes one leg to be longer than the
other, it can also lead to problems with walking.
Malformations
of veins are the third major feature of Klippel-Trenaunay syndrome. These
abnormalities include varicose veins, which are swollen and twisted veins near
the surface of the skin that often cause pain. Varicose veins usually occur on
the sides of the upper legs and calves. Veins deep in the limbs can also be
abnormal in people with Klippel-Trenaunay syndrome. Malformations of deep veins
increase the risk of a type of clot called a deep vein thrombosis (DVT). If a
DVT travels through the bloodstream and lodges in the lungs, it can cause a
life-threatening clot known as a pulmonary embolism (PE).
Complications
of Klippel-Trenaunay syndrome can include a type of skin infection called
cellulitis, swelling caused by a buildup of fluid (lymphedema), and internal
bleeding from abnormal blood vessels. Less commonly, this condition is also
associated with fusion of certain fingers or toes (syndactyly) or the presence
of extra digits (polydactyly).
Klippel-Trenaunay
syndrome is estimated to affect at least 1 in 100,000 people worldwide.
(source:
http://ghr.nlm.nih.gov/condition/klippel-trenaunay-syndrome)
Now before everyone starts
screaming "YOU GONNA DIE" let me say this: I manage this very
well. I have custom compression garments that I wear every day. I
am active. I ride horses. I can play sports. I don't let this
get to me. Yes, I was self-conscious about it, but with the wonderful
boyfriend I have, I'm not so much anymore. My KTS is more of the
lymphedema than all that other crazy stuff. Yes, I have Port Wine Marks
on my right side of my body. But that's the only part. My right leg
is the only part of me affected (although tattoos on that side are out of the
question. My side swelled a bit when I was tattooed just above my hip on
my back. I learned. But I'm ok.). I'm just as normal as every
other kid. I don't have the PWMs on my face. Just arm, butt and
legs. Now here's where I get personal (and not fun to admit). I do
have swelling in my groin. But you know what, a lot of people with
lymphedema do. So I deal with it.
Living with this isn't easy,
though. I can't tell you how much I was babied because of it, especially
after my staph infection (TL;DR, be careful of infections in the limb with KTS
or lymphedema. That can end badly. Luckily I had a good doctor at the time
(grade school) and we caught it on time.
I could have lost my leg. I didn’t
but I could have). When I went through puberty, it wasn't all fun.
Not that anyone has fun going through puberty, but going through it with KTS
wasn't a blast. Too much lymphatic fluid made my initial periods a
blast. Shaving my legs was out of the question because at that time I
wasn't wearing garments like I do now. So having such tight skin made the
tiniest nick from the razer a bitch. I would ooze for days. There
would be no blood so there was no clotting. So I would go for days with
soaked bandages. I still get this, mostly on my toes. If I don't
keep my toes moisturized well enough and I end up scratching them, they can
ooze. I've discovered that layering about 10 bandages alternating so that
none of the adhesive gets wet helps. I've come up with tricks over these
past 23 years of dealing with it.
High school was the
worst. Since I was on my feet due to marching band, the swelling tended
to increase more than it did in grade school. I marched only one year and
spent the last 3 in the pit where I could sit when needed. I pushed
myself, yes, but only to the extent that I could. The random days I would
ooze, I loaded up on pads and band aids. Those days of learning were tons
of fun (/sarcasm).
The only thing that I can
think that kept my leg from getting as large as it could have gotten was my
horseback riding. It kept my leg fit and useable. I never just sat
around saying I couldn't do it. I did because this was something that I
loved doing. And I still do. I've shown at the national level with
my leg the way it is. Granted, I wear a two piece boot to make sure I can
get my feet in, but if that's what it takes than I will do what I can to make
my life easier both in and out of the saddle.
Horseback riding isn't the
only sport I competed it. I also did baseball and basketball. I
wasn't any good at them, but I tried. I also did band. I roller
skated (still do sometimes). I bike ride. I don't let the fact that
if I cut myself, I may ooze. Honestly, I don't ooze that much anymore,
besides groin (yes, this oozes. The OBGYN has has looked at it, and it's
fine. My normal doctor has talked with me about it as well and as long as
I keep everything in check I will be ok) and toes. And that I try to do
what I can to avoid either of those oozing. It does happen and I'm
prepared for when it does. It's what happens when you've grown up with
this. Also, dark colors are your friend (trust me on this). Also, custom garments are wonderful. When I was younger (90’s), the garments I had
were horrible. The silicone bands that
held them up were painful. They were
these plastic… barbs (it’s the only word I can think of). It was most likely the mesh underneath the
silicone band that gave it the support, but at the age of 10, it was hell. It was painful to have that jabbing you in
the thigh, just below the leg band of your underwear. My mother caught me one day cutting the mesh
in hopes that it wouldn’t poke through.
It ended up doing so and I stopped wearing them completely. We even went as far as to get a chap style
compression garment that belted at the waist.
That was even worse for me, especially when it came to going to the
bathroom. I couldn’t stand it. So from age 10 to about 20, I didn’t wear my
garments. That’s probably why HS was
painful, but I didn’t care. I wasn’t
going to put myself through the pain of wearing those damn garments.
In 2005, my mother came
across an article about a local physical therapy doctor that was having great
success with lymphedema swelling reduction with massage, bandages and
compression garments. At that point, we
decided to try again. I started going to
bi-weekly and then weekly therapy sessions.
They showed us how to massage my leg and body and then how to wrap my
leg. I saw great improvement in the loss
of inches around my ankle and leg. I
lost at least 4-5” around my ankle and the overhang from it as well. I’ve gone at least 2x a year ever since then
(so at the time of writing this, 9yrs) getting new custom compression garments. As of today, I’m at the highest
compression. I’m also their youngest
patient as most are older people who have gotten lymphedema after surgery. But I’ve been told numerous times that they’ve
used me as an example to people on how it can really help. No matter the compression strength, I can
still pull my garment off at the end of the day with my other foot (the perks
of strong legs from horseback riding). I
can still be a normal person even when wearing them.
It's not pretty, but I
manage. It's part of who I am. Like I'm going to keep repeating,
this blog will be personal and probably a bit of TMI. But you know
what? If people don't know about this,
then how will they feel if they go through it thinking they're the only ones
who do? There's a lot we keep hidden because we’re embarrassed by it.
Hopefully I can keep this
updated. Have a good day everyone. And if you’re in the Midwest today, stay
safe. This snow is a bitch.
P.S.-- If you're in the Chicagoland area and are curious as to where I went for my Physical Therapy and wrapping sessions, please don't hesitate to contact me. Leave a comment and I can send you the information.
Sources:
Klippel Trenaunay (KT) Support Group
Lymphedema
P.S.-- If you're in the Chicagoland area and are curious as to where I went for my Physical Therapy and wrapping sessions, please don't hesitate to contact me. Leave a comment and I can send you the information.
Sources:
Klippel Trenaunay (KT) Support Group
Lymphedema
