Life with a Disability and Multiple Pterygium Syndrome Part 2

I'm baaaaaaack. This is an update video. The video is mainly about my very rare genetic disease, Multiple Pterygium Syndrome, and just life in general with a disability. If you know ANYONE with that disease, please contact me! I am looking for as much info as I can get to help with complications caused by the disease, such as with breathing and the webbed neck. Also, if you want to help by doing extra research and e-mailing me about different treatment options, I'd greatly appreciate it. The other parts of the video talk about life lately with doctor visits, graduating community college, and an update on friends and life in general. THANK YOU for those of you who have e-mailed and commented with sweet compliments and comments sticking up for me!!! It's greatly appreciated, and I mean that. Please watch all 6 parts to this video to get the full effect!!!

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[Ultramantaro666]

Ur awesum i can understand u and ur pretty nothin 2 werry bout:)

[sweetluvgurl]

@Ultramantaro666 Thank you. :) That's very sweet of you to say.

[mishakailana]

sweetluvgurl, thank you for sharing yourself with the world. You are an amazing woman. I am curious if doctors have asked you about reconstruction of the cleft palette. I have a Wire Graph supporting mine. Is that an option you would think about? Oh and don't ask me about when i had mine done, I only found out 2 years ago, when getting a molar pulled, did not expect wire cutters to be used and was asked when the wire graph was put it through the roof of my mouth, a question I cannot answer.

[sweetluvgurl]

Thank you so much for your nice comment. It's greatly appreciated. :) Doctors told me that I don't have a cleft palate apparently. It's just my mouth wasn't formed right. It's kinda crammed together more inside, making my teeth run together. Plus, I have excess gum. I'm gonna see about reconstructive surgery on my mouth. So, you had a cleft palate for a while and never knew? Did it affect your speech?

[GMPNY]

You've been through an awful lot and you speak very well. I had no problem understanding you at all. Thanks for sharing :-)

[sweetluvgurl]

Thanks a lot for saying that.  :) My speech has always been one of those things that really bothers me

[kibbalis]

ther is people way worse off than you so feal lucky my son has a cleft palitt and a hole in his hart also hernias in a few places but i feal lucky after seeing some of the orher kids at the hospitol

[mishakailana]

ick repeated information, I was unaware I had any kind of reconstruction of my palette. I assume a high arched palette not so much a cleft palette as that is more common to 45XO /46XY. last comment acted funny so i am rewriting. Just was looking for a little better explanation which i think you have provided. a high arched palette might cause the same speech issues, also feeding issues which is why i believe mine was done in infancy.

[sweetluvgurl]

Haha. Thanks. It's weird. I hate to talk. Yet, once I get going, it's hard to stop. :)

[GMPNY]

Thank you for the explanation. Nice of you to explain it all in such depth. Hang in there and keep up with your videos ☺