Hi, my name is Hank. I am a 22 year old with SWS. I have PWS on my face, crown of head, soft and hard pallets, in nose and right ear, and in my right eye. I do not have Glaucoma, but get check yearly.
I have had laser treatment for fourteen years off and on, and am going to have surgery with Dr. Waner in Jan or Feb.
If any adults or teens would like to share there story. I am all ears and we can exchange storys.
If you have any questions please ask.
Hank
Hank:
It's great to see you here! Thanks for joining.
Glenda
Hi Hank,
Its Brenda 37PWS/SWS/Glaucoma. So glad to see another adult here! I would like to encouage you and other adults with this syndrom in helping the parents of this group get the "tools" they will need to raise there SWS/PWS child to be as "Normal" as they can. With the self-estem and the self worth they will needand deserve to live in this crazy world. Kids learn from thier parents and will act accordinglly. So I'm hope to share our up brings with other parents to help them in raiseing there child without smothering them.
Welcome, can't wait to swap storys!
Brenda
Stats
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Name: Paul
Male
Age: 22
Location: Maryland, USA
Disabled Community College Student
SWS/PWS/KT
Chairperson for Teens/Adults with SWS Council
My name is Paul, and I have Port Wine Stain that covers 75 percent of my face and body. Have had 14 laser treatments since age 10. I have glaucoma in both eyes which is now controlled.
I have had 7 eye operations total. Was one of the first 13 glaucoma paitents to get the commonly used trebeculectomy to lower eye pressure. Today I suffer a reverse affect of glaucoma where eye pressure goes to zero instead of a continuous rise in pressure. This is known as a "hypotney episode" in which drops are taken to stabalize the eye pressure and return a temporary loss of sight.
My KT covers my entire right hand, fingers, and arm on that side and some inclusion of the right side of my back and chest area.
I do have seizures which are mostly controled at this point with 1400mg of Carbatrol a day. I do have breakthrough seizures on an average of every 3 or 4 months. Sometimes less depending on flu, allergies, lack of sleep, and increased stress.
I also have neurological deficets which have affected both sides of my brain but mostly to one side. I am not good at math, science, or doing fine motor tasks such as tying a shoes or buttoning a shirt. Siome gross motor tasks are difficult as well but not as much a problem. I excel in vocabulary, english, and speaking. I have a bad short term memory but long term is excellent. I hear to remember rather than read to remember, my brain just kind of re-wired itself at an early age.
I only take one or two college classes at a time because of the fatigue of medication and slow processing the my brain has. I'm currently talking review math for the 6th time.
Other problems I have are back problems, I have a 7 degree curviture of the spine.
I plan to be a writer, but it may be awhile till then so I'm attending school in a slow steady pace, and in the meantime helping others with SWS and bringing awareness to the world about it.
My parents are divorced since the age of 5 and my mother has been both my parents to me. She is a nurse and went back to college when I was 10 to obtain her degree for it. She has saved me multiple times from SWS related episodes. Might not be here today if not for her.
I have one older sister whois 27 and lives on the other side of the country in San Diego California.
These are just the basics to what else you can find out about me, but we all know the life of a SWS individual is a long and challenging one especially when it comes to dealing with society and their tainted view of SWS. If you have SWS and would like to talk to someone your age or have a young child and want to know what to expect, I'm here to give hope an explanations as well as listen to what you have to say. Feel free to contact me anytime.
-Paul
i am a 35 yr old female
with sws/pws
i have migraine headaches 14 days out of 30 in a months time
poohbear1013:
Hi! Thanks for posting to the group.
My 10 year-old grandson has SWS, and is doing very well.
I'm sorry to hear that you have such frequent headaches.
We have a private email group for adults with SWS only, if you are interested.
All the best,
Glenda
Hi All!
These are good introductions to you all. So very nice to meet you all. I would just like to say that you are all amazing people to me. Having to deal with any type of sickness has got to be quite trying at times, but yet the irony comes from the fact that your trials and tribulations are inspirations to the rest of us. I was told once that there are always good things that come from bad situations and I honestly laughed in this person's face when they said that. BUT, once I sat and actually thought really hard about it, it was so very true. For example, my step-father was abusive and when I was about 8 yrs old, I was put to work and let me tell you it was work for an adult, not a child. BUT, regardless of how horrible that was for me as a child because I couldn't play with the other kids, it has made me the organized, hard working person I am today. Life is not only a mystery, but it also comes with alot of irony. Don't ever quit being the amazing people that you all are. Take care and hopefully we will all chat again soon.
Ciao Shan
Thanks for your kind words...
We all need to hear encouragements like yours once in a while, I know it's hard for us to stay positive all the time, but that's what we all need to do though.
Thanks
Tom