Vascular Birthmarks Foundation Forum - View Single Post - My HUGE birthmark; HELP.
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Old 09-26-2007, 08:17 PM
Lisa_99 Lisa_99 is offline
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Join Date: Mar 2004
Location: Madison MS
Posts: 48
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Hi Sophia !!!

Welcome to the list ! We are glad you are here. There are some wonderful folks here to offer feedback and support ! You are not alone.

My daughter is the birthmark member of our crazy family. She is 18 , and has lived life to the fullest thus far!! We have attempted to help her develop into a strong, independent young lady- So far, so good ! ( except that right now the stage is I am 18 and MOM is stupid.... but that will pass -- )

Addie also has a vascular syndrome called KT ( meaning vascular malformities -- in this case in her left leg, and foot. ) She's been a gymnast, softball player, and all star cheerleader! She is supposed to wear a thigh hi compression stocking ---and has done so very well up until this past year. She has had her share of pain, needing her foot rubbed, having to elevate her left leg and asking to call mom from school -- just because it hurts.

She is paying the price now - as her foot and ankle are beginning to show true lymphedema - A smart doctor has told her several times what the possibilities are if she DOES NOT wear the garment. She knows what she has to do -- we've taught her and brought her the knowledge -its' up to her to maintain and take care of her body.

To share how's she's handled those questions as you get ---
well, she's been known to say IT"S a birthmark !!! NOO It does not hurt -- the veins underneath hurt sometimes. Or -hey I have a pair of stockings - I only need one -- You can wear the other one !! -- or just ignore folks.. That seems to work best-- as difficult as it is for her at times.

Keep in mind , when others ask or look at you -- they do it out of the not knowing - this is totally normal nature -- they will most likely react based on your reaction to their stares , etc. Take it all in stride-- they don't know--- they stare, unless there is conversation for you to explain they still don't know any more than they did when they stared. It's all a crazy cycle!!!

Over the years, Addie has gone through times when she wants to the birthmark gone, then at other times, she will say " hey it's part of me and who I am - it's ok .." YES it has gone from one extreme to the other -- believe me !

I so hope for you that you can get through these times and use the negative feelings to turn into something positive!

We are all here for your support and will continue to be!
Write if I can help or you just need to chat!!!


Lisa
email: lisa.williams99@gmail.com
Addies's mom
Mississippi

Ps: if you have not already -- and there is any pain involved you may try to find someone to do the MLD massage technique for you. MLD stands for Manual Lymph drainage massage.


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