Am I helping or not? - Vascular Birthmarks Foundation Forum
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  #1  
Old 01-01-2005, 05:40 PM
kristymca
 
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Default Am I helping or not?

I would like the input of some of the younger people on this board. I am 21, and I have a little sister who is 18 who has a large hemangioma that coveres the left half of her face and continues down her neck to her left side and left arm.

When she was little it was all very bright red and swollen, but now it is not too noticable except on her face. Because it was very swollen around her eye, her eye was swollen shut for the first several years of her life, and she is mostly blind in that eye, and her eye lashes are grown inward and her eye lids are mis-shapen. Her face is still pretty red around that eye.

She never talks about it really (is that common?), she never complains, only one time have I ever really heard her say much, and that was after I was in a car wreck and had several stiches on my face, and I said something to the effect I hated going in public, because I felt very self-consious about people looking at me. She was quiet, and just looked at me, and then said "How would you feel if you felt like that every day of your life, and you knew it was never going to change?".

My question is, I want to help her, I know my parents can't pay for her to have surgery or treatment, but if she wants it, I want to do what I can to make it possible. How can I talk to her about it ( I know it sounds horrible, we are very close, but it's just something we don't talk about) without her feeling I think she's ugly, or inferior, or needs it, I just want her to know that if she wants to do something, I want to help her, but I don't know how.

Also, are there any programs that will help with this sort of thing for low-income families?

Thank you so much!
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  #2  
Old 01-01-2005, 05:55 PM
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swsc swsc is offline
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Default Re: Am I helping or not?

The Hemangioma Treatment Foundation.
http://www.hemangiomatreatment.org/ might be able to help. Or you might contact Linda Shannon at the VBF directly.

As for how to approach your sister, just follow your heart.
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  #3  
Old 01-01-2005, 06:39 PM
eprmo eprmo is offline
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Default Re: Am I helping or not?

I agree with contacting the Hemangioma Foundation in South Carolina,,Dr. Marcelo Hochman,,maybe they can help.

About talking to your sister, I have a 15 year old daughter, and sometimes it's very hard to get her to talk about her feelings....They are right about us not knowing how they REALLY FEEL..

Maybe you could show your sister this web site,,and she can read about how others like herself feel.. maybe she won't feel so alone...

Also,,I sometimes talk about how it does STINK they have to deal with this,,but there is hope now,,with all the diffrerent cosmetic surgical treatments available now,,anyone can become "what they want to be"...

You are a wonderful, caring sister, and I am sure she is glad she has you..

Elissa
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  #4  
Old 01-01-2005, 06:56 PM
nickbar nickbar is offline
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Default Re: Am I helping or not?

Great info above (I would follow the advice!!!!!!!!!)

I just wanted to add that you are an amazing sister, she is lucky to have you looking out for her and wanting the best for her.

GOOD LUCK!

Corinne
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  #5  
Old 01-02-2005, 09:16 PM
hankbartenbach hankbartenbach is offline
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Default Re: Am I helping or not?

Hi Kristymca,

My name is Hank and I am 22 and have a Port Wine Stain on my face and head.

I agree with elissa, you should get your sister to get onto this website. At first just have her read stories about other people around awere age that have similar conditions. At first if she is not comfortable sharing her story that is fine. It takes some people to open up when they bottle it up and do not talk about the condition.
That is what I did growing up and then I started volunteering on foundations. It is allot easier for me to explain and talk about my condition over the interent verus talking to someone face to face, because it make you feel uneasy. I know what your sister has gone thru I have had my PWS since birth. If she every wants to talk one on one she can email me directly my emails in my profile.

I think you should express your feelings to her as well, my sister does not ask, or do I tell her because she does not understand. But you want to understand what she is gong thru and you need to let her know that if she wants to ever talk about it that you are there to support her thru the good and bad times. Just treat her like a normal person and she will not be as uncomfortable talking to you about what she goes thru on a day by day basis.

I hope this helps and if you or your sister has any other questions please ask we are all here to help.

Hank
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  #6  
Old 01-03-2005, 12:47 PM
imported_missy imported_missy is offline
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Default Re: Am I helping or not?

The above advice is great... about where to seek treatment. But if I read your question right, I'd start out with one of the following:

"I know we never talk about this, but I'd like you to know that I'll be here if you want help in getting this corrected."

"I've found these resources... www.birthmark.org and www.hemangiomatreatment.org. Would you like to look at them together?"

"Having had the tiniest taste when I had my car accident of what you might be going through, I'd like to you to know that if you want to do something about it..."

It's not easy to broach those topics that we NEVER talk about. It's especially difficult if you're close... you have something really important on the line, your relationship with your sister. I think you might just have to screw your eyes shut and start!! Remember, too, that if you're as close as you say you are, she'll not want to destroy that relationship by getting and staying angry.

If you give it a try, please let us know her reaction and how the talk goes! We'll be keeping our fingers crossed for you!

Missy
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  #7  
Old 01-03-2005, 01:36 PM
kristymca
 
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Default Re: Am I helping or not?

I want to thank everyone so much for their responses and help, it really means so much to me. I didn't really even know where to start, and what direction to go, and you are all so kind and helpful and supportive. I'm going to try talking to her this week, and I will keep you updated on how it goes.

Thank you all again!
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  #8  
Old 01-05-2005, 07:47 PM
kristymca
 
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Default Re: Am I helping or not?

Hi Everyone, this is the original poster writing, I talked to my sister this week, and it went Great! She is really excited that there are options, and she's excited about the website, and I'm really excited to find out more and get her the treatments she needs. Thank you all again so much!
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  #9  
Old 01-05-2005, 10:20 PM
imported_missy imported_missy is offline
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Default Re: Am I helping or not?

MOST Excellent!!

Let us know if she decides to pursue treatment and how things go with her!

Missy
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  #10  
Old 02-09-2005, 05:56 AM
hankbartenbach hankbartenbach is offline
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Default Re: Am I helping or not?

Hi Kristy,

I was just wondering if you had the chance to talk to your sister? I so how did she respond to it? If not, are you still waiting for the right time.

Just looking for an update.

Thanks

Hank
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