Tuberous Sclerosis Alliance's Comment Board

Listing 1-50 of 64
12
of
2
Next ›
Name Comment
Mesofrog

Oct 27, 2009 3:26 PM

How's it going TSA?  Hope everyone is ready for Halloween.  Wishing you all a Happy Halloween.
Lori *HANNAHZ MOM*Lori Wolverton

Sep 18, 2009 5:53 PM

I would like to know now that "vigabitrin" is approved by the FDA ... does anyone know if u can get it thru a pharmacy in the usa ... i live in VA and i have been getting "vigabritrin" thru a pharmacy in canada thru a pharmacy in NY and was wondering if it is available thru insurance yet.... If anyone knows more about this can u please let me know....
☻LunacyXFringe☻

Aug 26, 2009 7:13 AM

I would also love to hear from teens who are going through the same thing.
☻LunacyXFringe☻

Aug 26, 2009 6:59 AM

hey!! I just decided I would write a little something for this:

well my name is hannah and I have tuberous sclerosis and I am just beginging to come out to the world and tell people what I have because I have been to embarresed. I have been getting lazor sense I was 3 but have recently stopped and got plastic surgery and all my spots are mostly gone.

I just would like to say that  you guys are doing a great job with everything and keep up the great work =)
>G.I. JOE<

Jul 25, 2009 9:15 PM


Check out my page
http://www.doulike.us/photos/5751281.html?b=4&w=46



Let me know if you like me YES or NO
http://www.doulike.us/photos/5751281.html?b=4&w=46
*angie**

Jun 14, 2009 6:33 PM

hola a todos me gustaria poder hablar con alguien ,mi amiga acaba de tener una bebe y tiene tuberous sclerosis y la verdad no sabemos mucho de la enfermadad ojala alguien de ustyedes nos puedad a yudar ,gracias
MissyMissy Brouillette

Jun 10, 2009 6:07 PM

Hi Everyone-My son, Charlie,was diagnosed at birth with TSC. He has rhabdomyomas, AMLs, and too many tubers in his brain to count. He has tonic clonic seizures and infantile spasms. We are from Louisiana and would love to meet other TSC parents. Also, please feel free to add me as a friend.-Missy
BR3NDABrenda Delgado

May 22, 2009 6:13 PM

HI EVERYONE MY DAUGHTER PAOLA HAVE TUBEROUS SCLEROSIS. SHE DIAGNOSTIC WHEN SHE HAD 6 MONTHS, SHE HAS NOW 8 YEARS-OLD
...~tara~...

May 16, 2009 6:03 PM

Hi everyone. I just wanted to give an update on my son. His surgery was a success. Both tumors were removed. We are home now. He's been sick. He ate for the first time this morning. Recovery so far has been stressful on him & myself. The neurosurgeon made an "s" shaped incision on the top of his head. I guess it takes about 1 month for the flesh to heal, & three months for the skull bone to fuse back together. I am soooo relieved the surgery is behind us!!!!! I'm very thankful for this my space page by the way.
Kiana a.k.a Nenn Kiana Rodrigues

May 12, 2009 7:16 AM

2 year old son having complex mild seizures with lip smacking and strange giggling. Anyone experienced this? He is not on meds right now. Thanks
...~tara~...

May 11, 2009 7:10 AM

Hi everyone. My son Noah's surgery is today. The neurosurgeon is going to try & remove a sega tumor in the left ventricle, & attempt removal of smaller one in the right venricle. I just wanted to put the word out & have plenty of prayers in the air. Thanks!
Purringbabe

Apr 12, 2009 2:02 PM

Photobucket
rachael

Apr 10, 2009 3:39 PM

Get This from CyArena.com

Send to Friends email
Purringbabe

Mar 17, 2009 3:26 PM


St Patty's Day Comments
TERRITerri KUDSK

Mar 9, 2009 12:17 AM

This comment was sent by your friend via the Green Spot app.
To block this app and all communications from it, click Here.


-------------------------------------------
..
Hey Tuberous Sclerosis Alliance,
I left you a gift. Click and pick it up.

...~tara~...

Mar 3, 2009 4:50 PM

Hi everyone~ my son has TS, & he is 11 now. We just found out from a recent MRI that he has a sega giant cell tumor on the left side of his brain plus another one on the right is starting to develop. He has 8 nodules, a cluster of cysts on his right kidney, & had a heart ablation surgery 3 years ago,also all the typical skin symptoms. I really wanted to know if anyone out there can get back w/ me if you or your child has had the "sega". What was the outcome? did you/they get on "Rapamycin"? Thank you.
theresa

Feb 28, 2009 9:26 PM

hi all,i have a 21 year old daught er(robin)with tsc,she had brain surgery at 5 to contrrol siezures,but they came back about 2 years ago and they were worse than before,we also have alot of behavior problems with her,i love but i have my days lol.most days shes a loving kid.mentaly shes about 14. we are having alot of trouble finding a place for her to work because theres no funding any where,where we live so she stays at home most days.i would love to talk to anyone else who has this disesase or parent.dont think ive ever talked to any body else with tsc or parent. so feel free to email me any time at hawney1111@aol.com.thanks theresa
Mesofrog

Jan 14, 2009 4:37 PM

I hope All is well for this new year for all. Happy new year. Be safe and work out.
BeccaRebecca Slocum

Jan 14, 2009 2:42 AM

This comment was sent by your friend via the Causes app.
To block this app and all communications from it, click Here.


-------------------------------------------
Think Autism.

Come join my cause: Think Autism.! You will be able to recruit friends, raise money, and add a profile badge to show your support! Join_cause_button_260x52

Lori *HANNAHZ MOM*Lori Wolverton

Jan 12, 2009 11:34 PM

hi my name is Lori and my daughter was diagnosed at 5 months with TSC and she is doing alot better now since she has been on vigabatrin and i am soo glad that everyone is working hard to get it approved and we are almost there ...YAY... but if there are any families in Virginia that wish to share info or would like info you can add me or anyone else in other states i might be young but i have learned alot about TSC and thats because its serious and i love my daughter i was devastated when i found out about her having TSC but the more i learn the more i stay focused that one day someone will help us find a cure for this rare but serious condition so keep your heads up everybody and know that your not alone and me, my daughter, and my family understands what your going through and its okay its hard but it will get better atleast thats what i pray for everyday and every night i look at my daughter and pray!!!!!!
Kiana a.k.a Nenn Kiana Rodrigues

Jan 6, 2009 2:06 AM

Hi...anyone that is a carrier for TS thinking about having other children?
DeVine

Dec 31, 2008 9:18 PM

Hello... My 17 month old was diagnosed with TSC just last month and we still have questions that maybe families currently living with this disease can answer. I am in TX and would like to connect with people dealing with TSC.
BeccaRebecca Slocum

Dec 23, 2008 3:38 PM



MERRY CHRISTMAS !!!
♥Chelsea♥

Dec 10, 2008 11:01 PM

Hello everyone:) My son is now 16 months old and he has TSC. He was diagnosed at 10 months old...so not really that long ago. We are finally able to cope with the fact that our little guy has TSC but it wasn't easy to hear the news when we first found out! I would love to hear from other families who also have someone affected by TSC. Feel free to contact me...I know that support from others is amazing during tough times!
Kiana a.k.a Nenn Kiana Rodrigues

Dec 9, 2008 4:23 AM

Hello...just wondering about families with multiple children where one parent has TS.
How many of your children have TS?
Jacquie

Dec 2, 2008 11:26 PM

Hi, I would to know anyone who had kidney and lung problems, from TS.
So I can hear what you or someone you know went through.
Thanks
Kiana a.k.a Nenn Kiana Rodrigues

Nov 10, 2008 5:22 AM

Hi everyone! New to ts myspace. I have a one year old son who just completed genetic testing for TSC diagnosis. He has multiple heart tumors but has not yet had his MRI to check anything else. Anyone had heart tumors found first and then other tumors? Add me....Thanks
chrischris smith

Nov 10, 2008 3:07 AM

I have a 4 year old daughter with TS. Please add me to your friends list as my family is reaching out to other families as will deal tih TS. I look forward to meeting everyone.
Mesofrog

Oct 31, 2008 2:26 PM

Happy Halloween everyone.
Mesofrog

Oct 6, 2008 11:56 PM

I hope everyone is well. Have a great Tue.
1 Awesome Mom

Oct 6, 2008 6:31 PM
stephanie

Oct 6, 2008 1:32 AM

hello, I have a 4 year old son who has TS and like everyone else I would like to find some people who I can talk with and relate to. We live in Spokane, Washington.
Cheryl

Oct 1, 2008 4:20 PM

Hi, I am Cheryl and my brother who is now 31 was diagnosed with TS when he was a young child. Many seizures and meds, he eventually outgrew. He does though have the mental capacity of a 12 year old and it has been a tough road sometimes. Please prayer for our family as we are going through a tough time at the moment. Thank you and God Bless.
ShAnNoN

Sep 30, 2008 3:56 PM

Hope everyone has a happy day today! Sending much love and long days of happiness your way!
.:.♥.:.Crystal J

Sep 26, 2008 5:51 PM

Hello from California. My name is Crystal. I'm 28 and I have TSC and so does my 8 year old son, as well as my father and my eldest brother. My son started having infantile spasms when he was about 6 months old and they treated him with the steroid shots.(ACTH) It seemed to be a miracle drug but now that he's older, the impact of the damage that the medication or the actual spasms are effecting his behavior. He's in 3rd grade and I get phone calls daily from his principal telling me how he is disrupting the entire class. This school year has been the worst so far. If anyone would like to add me please feel free to do so. I need major help with trying to figure out what to do. Just having someone to relate to would be nice also. Thanks so much.
Fooled Again ( H.E.S)

Sep 15, 2008 12:49 AM

HEY, MY NAME IS KAROL AND MY 18 YEAR OLD DAUGTHER HAS TSC AND PKD.RIGHT NOW SHE IS IN THE LAST STAGE OF RENAL FAILURE, CAUSE OF THE PKD. SOMETIMES I JUST WISH THERE WERE SOMEONE TO TALK TO, WHO CAN UNDERSTAND THE FEELINGS I GO THROUGH. I HAVE BEEN INVOLED WITH TSA EVER SINCE HALEY WAS DIAGNOISED
AT 2 YEARS OLD. SO IF ANYONE ELSE WANTS TO TALK TO SOMEONE WHO HAS BEEN THERE, I WOULD WELCOME THAT VERY MUCH.I LOVE HALEY SO MUCH, SHE IS MY EVERYTHING.
THANK YOU SO MUCH FOR MAKING A MS PAGE, I THINK IT'S ANOTHER GREAT WAY FOR US TO FIND EACH OTHER=)
bridgetBridget Venetta

Sep 14, 2008 12:28 AM

For those looking to connect with other parents or others that have TSC go to www. tsalliance. org and click on For Families and Caregivers and join us for the discussion groups. There are hundreds of us from all over the world who support each other with some of the worst and the greatest TS has thrown at us.
Take care
~CareBear~Stephanie Lathem

Sep 8, 2008 10:18 PM

hey everyone my name is stephanie and my son was diognosed with tsc he was flown to san fransico after birth and i found that is he had it and i have done much research on it but i want to talk to people who have actually experianced what i am going threw and what to look forward to i know i am very scared my son is 2 in a half months old ......but it would be nice to talk to anyone who would like to talk to me and thanks
Mesofrog

Sep 4, 2008 6:39 PM

Hello every one. I belive this will help out. Everyone might like it aswell.
http://www. neurologynow. com/pt/re/neuronow/home. htm;jsessionid=LQqCv6HLwV7lG2HjqT2kNyPxtG1vW4HbkdPswnyyN1VTzs6STcnG!-1004083789!181195629!8091!-1
Go to that link and you can sign up for a 1 year sub. Best luck every one.
*LUV N MY BOYS*Darlene Hoesly

Sep 1, 2008 8:32 PM

I have a 7 month old that was diagnosed with TSC about 2 months ago! Its been life changing few months... were still working with medicine to get his seizure under controll! I would love to met new friends that are going thro or have been thro the same thing! Im still trying to learn all I can about TSC!
Darlene
Paula

Aug 24, 2008 4:30 PM

My 5 year old Granddaughter has TS with 12 brain tumors/tubers. We are stuggling to try and get her seizures under control.
I am so glad TS alliance is on My Space!
Shelly

Aug 24, 2008 7:21 AM

So glad that the TS Alliance is now on myspace, what better way to get the word out. I'm mom to Ashlin 7yrs old w/ TS.
CornbreadGlenn Dixon

Aug 19, 2008 12:47 AM

Hey, I just wanted to let everyone know about the Drive FORE a Cure charity golf tournament that is being orgnanized by the TS Alliance of the Carolinas. It will be held on Sept. 13, 2008. If anyone would like more information, please contact me via my profile.
Thanks!!
MissyMissy Brouillette

Aug 16, 2008 12:57 AM

My son, Charlie, was diagnosed with TSC at birth. He is now 6 months old and doing very well. We live in south Louisiana and I am looking for anyone in the area to start a parent support group. If anyone is interested, please send me a friend request.
Jacquie

Jul 22, 2008 6:06 PM

Hi Everyone. I am a 39 year female, who was born with TS. I am looking for adults who also have TS. Request to be my friend on my page.
LauraLaura Moody

Jul 17, 2008 3:03 AM

Hi Everyone, my name is Laura and my daughter is now 8 and was diagnosed with TS when she was a little older than 1 year old. I am looking to connect with other families helping their children adapt to life with TS. My child is struggling with now being aware of her differences.
Dawn LeeDawn Inman

Jul 16, 2008 3:12 PM

my name is dawn...I am 33 and I have had TSC for 20 yrs I also have two kids with TS.
I am the adult liason for the alliance of the heartland and it s great to see a area where we can all talk and compare stories
MissyMissy Barrett

Jul 15, 2008 4:39 PM

Glad to see TSA on Myspace! My son Joshua has TSC. He was diagnosed at about 6 months old. He is four now. There are still so many people out there that have never heard of it. We had never heard of it until we got the diagnosis.
I pray they find a cure one day!
Listing 1-50 of 64
12
of
2
Next ›