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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Cavernous Hemangioma on shoulder (http://birthmark.org/board/showthread.php?t=6007)

jpe2011 09-05-2012 02:59 AM

Cavernous Hemangioma on shoulder
 
Hi everyone! I am so glad to have found this website! I just went to the Dermatologist today to get a second opinion on my sons hemangioma and she said exactly what his pediatrician said which is to wait it out. I was disappointed that there is nothing I can do to make it go away.
I just wondered how I should deal with other people staring and commenting on it. Sometimes people can be so insensitive and it frustrates me knowing my poor baby (now 12months) has no clue he is different in any way. I get scared thinking of how mean other kids can be and fear for the day when he will get picked on . It does hang out of his clothes and I find myself constantly covering it.
Am I right in just letting time heal it since it's not debilitating in anyway? Or should I get treatment sooner than later....he is already a year old.

nickbar 09-11-2012 01:05 AM

Is there anyway you could send me a photo? you can email me at vbfadvocate@live. com

I know it is difficult to deal with how rude people can be. My advice (and it was the best way I could cope) is to educate people (I actually got to the point where I thought to myself "I dare you to ask")... I carry business cards with links to vbf website. Sure, most people don't really want to know... but it is a good polite way to remind people they are out of line. "I noticed you were interested in my child, here is information about his condition if you would like to know more"... :)... if you are willing to send me a picture, I might be able to give you a better idea of what you might expect as far as involution.

KD 09-13-2012 02:25 AM

Is there a way you can cover the shoulder up with his clothes?

jpe2011 09-22-2012 04:29 PM

attempting pic upload
 
https://www.facebook.com/media/set/?...2191522&type=1

That is the link to my facebook, hopefully it works bc I set the pics as private (only visible to me). Part of me wants to share with people about hemangiomas, but the other part doesnt, because I dont want negative reactions (even if it is behind my back). Also, Im not sure what my husband would think about me posting pictures about CJ's hemangioma to all of our friends.
I tried to upload the pics on this website but it said the MB bytes are too big:(
I will keep trying to get you pics, it is pretty big and does hang out of most of his clothing. To be fair, most times people dont say anything, they just stare, especially this summer when it was hot and he had his shirt off for swimming etc. There was one incident, however, that a guy said "WOW! What the heck is that!!??". I was a bit shocked at his audacity but just explained what it was and was glad CJ was too little to be offended as I was.

jpe2011 09-22-2012 04:59 PM

I have an album of my sons hemangioma on my facebook account set to private, but I could make it visible to anyone who is interested. Just become my facebook friend and I will cutomize my album to you. my facebook: jessica egure


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