Life with a Disability and Multiple Pterygium Syndrome Part 1

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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[DreamsCPable]

hey i have a webbed neck as well but the doctors told me it wasn't caused by any disorder but i just wanted to let you know that i went to a plastic surgeon about it and he told me that he can do something called a z-plasty...so that's what im going to have done soon. look into it!

[sweetluvgurl]

@DreamsCPable Oh really? Do you have a condition? Thanks for the info. That procedure sounds familiar.  But see, I think that's used more webs on the side of the neck. Mine isn't that bad. The webbing I'm talking about is like my neck is so short and confined. I wish there was a way to fix it. I saw a craniofacial doctor. He told me whatever neck I do have is muscle, and so he can't do anything. Honestly, he seemed kinda like an idiot though. lol But I do kinda agree with that.

[blueciel8]

I indeed hope you feel better. I'm very confused about your illness because I have a pterygium in my eye, it's from too much sun exposure. I'm very surprised and it's hard to believe that your illness and the discription of it would be called what your calling it. I will indeed do some research about it and get back to this page when I find out some info. Good luck!

[sweetluvgurl]

Thanks. I appreciate that. Actually, I have very very good news. I found out my problem with my breathing. I have pectus excavatum in my chest, which is basically where the chest is sunken in and my ribs are squashing my heart and lungs. But I'm having the Nuss procudure to correct it in a few months. But thanks so much anyway. I remember how hopeless I felt when I posted this cuz I never imagined I'd actually find a solution for my breathing, but I have.

[NinkComPoop]

Best luck for the future my friend and I hope you have all the love and support you need. <3

[sweetluvgurl]

Thank you so much. I really appreciate that. That's very sweet. :)

[wildtime100]

i think your so beautifull ... and im so glad to have you as a new friend =)

god bless u hun <3

[MadMadamJess]

Girl, you are one tough cookie! I adore your blouse too!! You keep on telling the truth...you're absolutely right, people can't handle the truth when it's not what they want to hear. What an inspiration you are, doll. I'm so sorry about your difficult life...I know it's cliche sounding, but I find it to be true.. we gals with difficult lives tend to be a whole lot deeper and more loving than "normal" folk. I do wish you all the happiness and health in the world tho. All my love!

xoxoxo

- J

[sweetluvgurl]

Really? Do you know how I can contact them?

[PENALIMPLANT]

I think I do know someone who knows about your condition