Dear Christina,
Those of us with TBS,due to the fact that it is a little known syndrome,sometimes feel very freakish....and it is very hard to find any info on it...it is nice to be able to come here and get in touch with others who have the same syndrome,that may know something about it...as for the group on yahoo,have you 'talked' with jules,or just the doctor,or just read what is in the group? The people in that group are so very helpful(not saying they aren't here,just a different kind of help!)and it is very! nice to know we as TBSers are not alone,trust me! Welcome all newcomers to this thread,and definitely stay with the yahoo group!You will find out sooo much useful info over there,trust me! My id over there is unomamabear,if you would like to chat sometime. Blessings!

Hello! I would imagine that there is also a dearth of request for how to use QT for healing because you "know" it's basically incurable and don't want to get your hopes up. Perhaps you can't heal it fully - but that doesn't mean aspects of it can't get better. You can only get to the outer limits of what QT can or cannot do for you and/or your children by starting to use it. It can't hurt, and getting energy work is even helpful for people who just want to maintain their wellness. The key is to be persistent and consistent. Good luck!

Post to eyeballgodlease let me know if you are registered in the yahoo group for TBS....it is definetley! a good group for information;I have learned sooo many things about this syndrome,that I wish I had known years ago!Sigh,better late than never,huh? Yes,it does affect your sight,as I have learned...I am so glad you found that group!
to Jocelyn(sp?)no,there is no cure for TBS,but I think the reason alot of people end up here in QT with questions about TBS,is becus when you google it,it leads straight here!It is nice to know this thread is in place,whether one is looking for healing,looking to connect so we don't feel so alone,etc...and there are so many wonderful people here,that really truly care about others who are not fortunate enough to have good health.I am glad I found this site,even tho I don't come very much,nor do I post like I used to...I still 'read' through the threads,get advice,and just catch up with wonderful friends I have made!Thank you to all who make others feel soo welcome,and not so alone! Many blessings to all!

Hi, Superstarr - I'm glad you guys made it here, too! Just want to reiterate - just because there's no cure doesn't mean there's no help! So I do hope you folks will avail yourselves of whatever Q-T may have to offer you in the way of moving at least a little closer toward balance and ease.

SuperSTARR,
I pretend to no knowledge of TBS beyond what you have taught to all of us. I wish that was not so.

May I suggest that you arrange a healing circle? it may sound odd, but Quantum Touch has not found any boundries as yet, something wonderful may come of it.

Perhaps R. Gordon or Jennifer could set aside the chat room for all of you to use on one specific time that allows you all to attend
the healing circle.

If it is at a time I can make it, I will.

I can only hope that another miracle (of sorts) will take place.
Please suggest it to the office, certainly a request can be answered if nothing else.
This may be impossible for the office to do for you, but if that turns out to be true, find a chat, make a chat, and let us know what and where to go.

I would like to help too, and feel that many more would join in the circle when they can.

Secondly: the picture you have up of you and lovely Starr is so relative to renaissance paintings that I feel you should, if possible, take that to a photographer, have it enlarged, not cleared, and mount it on the most see-able wall available in your home. It is a classic. This info is coming from a lifetime of making art for sale. I know whereof I mumble.

with hope, healing love,
zeneagle

hi, I am David, and my daguther has TBS. She is now three and has minor efect of it. We klive in NC also, and visit baptist hospital in winston salem.....this is a web site that has helped a little and its the leading doctor on tbs, in germany.

http://www.humangenetik-freiburg.de/

they have an english website

What a great topic this is! I've never heard of Townes-brock Syndrome (TBS) before and I thank you all for openly sharing about it so that we could all learn from it.

What I dearly love about the Quantum-Touch message board is that it is open to all who wish to contribute.

Blessings to you all,

First, I would like to say to all QTers (just a gentle reminder) that this work knows no limits. Love knows no limits. To all TBS suffeerers, check the practitioner listing - is there one near you? Try it. Maybe even attend a workshop and learn it. There are books and DVD's and pracitioners that would love to help. We may not know the divine plan for TBS but perhaps we can all help. Perhaps running energy on a mom/dad before pregnancy, mom, during pregnancy with the intent that the condition is not passed along and the child is healthy. We work in the quantum - that space before DNA. Can we change it? We don't know. We don't know until we try. We are not the healers, just facilitators. Love does the work. Our intent drives the bus, so to speak!

My son, Dominic, was diagnosed with Townes-Brock Syndrome when he was born, on June 21st. The Genetics Doctor contacted the man that discovered TBS in Germany. He said that it was associated with TBS. My son has ear tags, extra thumbs on both his hands, and is mostly deaf. His ears are slightly cupped out, making him look like an elf. He also has his kidney's fused together. But everything else is normal, thank GOD! All of these symptoms are associated with Townes-Brock Syndrome, according to the doctor in Germany.

OneMonthOld[1].BMP (225 KB, 13 downloads) My baby

What a beautiful baby boy! Yes, listen to Jana: This work knows no limits. Anything is possible.
(((((((((((((((((((Dominic)))))))))))))))))))))))

((((((((Wee, darling Dominic))))))))))

Hi My name is Laura, both my son and husband have TBS. We only found out about my husband when I was pregnant with our son. He is now 8. My husband who is now 35 has chronic renal failure, has severe deformity to his feet and hands, has the low set ears, sensory neuro hearing loss, had hypospadius and imperforated anus. He has recently been suffering from vision loss. The doctors have no clue if its part of the TBS, because they cant find any other link. He began to loose his sight last April of 2006. He is now almost completely blind. Is anyone else having vision troubles with TBS? My son had the imperforated anus, has the sensory neuro hearing loss, foot deformity with club feet and had extra thumbs on both hands. He to has the low set ears. Currently his sight is fine and his kidneys are doing ok. He does have severe behavioral and emotional issues and learning disabilities. If anyone can shed some more insight. I am trying to stay strong for them.

Hi Laura,

Going back on this listing I found a gentleman in Chapel Hills,N.C. who seems to have the same concern. It seems his eyesight was beginning to be affected.

How difficult it must be for you and for your family not knowing the complete extent of TBS and not having some sort of resource to turn too.

I pray that you find some resolution and that your strength and courage continue.

Many Blessings

Dear Laura,...Hello! My name is Amy Smith,I live in Chapel Hill,N.C. my eyesight has been affected since 2001,for which the doctors said there was no connection at that time to TBS...since then,I have heard from people whose eyesight is being affected,plus the other symptoms you mentioned...google TBS in yahoo,and you will find a group just for 'TBSers' as I like to call us...YOU ARE NOT ALONE!!!!My family is also trying to stay strong for me,plus we are in touch with a wonderful geneticist,Dr.Cynthia Powell,here at North Carolina Memorial Hospital here in Chapel Hill...please get in touch with her;she may be able to help you and your family..919-966-4131 and ask for the geneticist on call...she is a pediatric genetist,so please don't be put off by that;she is a wonderful help to myself and my family! plus you may pm me for any other questions or concerns you may have! Take care of yourself,so you can take care of your family!!! And many blessings to all of you!

Hello,
I was told that my 8 year old has VACATERLS soon after he was born. Recently, his hearing test showed bilateral hearing loss and we go back next month to see if it has progressed or not. When I took my younger son to the ENT yesturday I mentioned my older VACTERLS child and his hearing loss and asked me if I had heard of TBS. She said she would just mention it becasue of the hearing loss and the anomalies he was born with and said mention it to my older son's ENT.
Can it be possible to have both TBS and VACTERLS? Just curious.
Oh, for TBS is it like VACTERLS where you have to have so anomalies to fit that catogory?

Thanks.
Amy