Just a quick reminder that Dr. Standard, and often accompanied by Dr. Herzenberg, is conducting his regular chat on Thursday, March 11. The chats all start at 9:15PM EST (yes, night time, in order to allow familes to get home from work).
If you have never participated, or forgot the information, please contact me at vbrady (at) lifebridgehealth.org . And just a reminder that the doctors don't "push" lengthening at the chats. They are happy to talk about any treatments, but if you are interested in finding out about lengthening this is a good way to pick some very experienced brains.
Just a quick reminder that there is another limb length discrepancy chat this week. We usually have a number of families with CFD participating, if you want to "pick" their brains. For further details see the previous post which includes contact info.
My 2 year old son Daniel just had the Superhip 2 surgery in January with Dr Paley. We regularly update a blog about Daniel and I have recently posted a detailed entry about our experience that I thought might be useful for those families who are thinking of or embarking on this journey. Please feel free to contact me. The blog can be found at www.danielrigby.blogspot.com.
My grand-daughter Malgosia is 3,5 years old. We live in Poland,
Bialystok. She is born with a right congenital femoral deficiency
Paley type 1 B. Thanks to God we found Dr Dror Paley, who examined
Malgosia and qualified her for treatment with 98% chances for
recovery. 1 reconstruction and 4 lengthening surgeries are planed.
Please find analysis and recommendations from Dr Paley below.
Costs are very high. Could anybody share his experience in acquiring
sponsor to finance the surgeries to be performed in St.Mary's Medical
I just wanted to give a little history, hopefully provide a little encouragement, and just see if anyone out there has questions during or before this process. I am now 23 years old and have been with Paley since before he was on his own when I was 8 months old. I have unilateral pffd with out a fully formed hip and knee. When I was finished growing I was going to be 22 inches from the ground. I had 6 lengthenings and took a break to finish high school and college. I had my 7th lengthening in Dec.
Just a quick not that the doctors at the International Center for Limb Lengthening are conducting some more online chats. The next one is this week on Thursday Jan 14, with one the following month on Feb 11.
Happy New Year!
Just wanted to remind everyone that we are continuing to conduct our monthly limb length discrepancy chats. The next one is this Thursday Jan 14 at 9:15 PM, and the next one will be the following month February 11th.
I am happy to find this forum. I am a 43 yr old female with unilateral PFFD. Would love to talk with others about skin breakdown, arthritis etc. Would also be happy to answer any questions for younger folks/parents etc. Just happy to find you all!
draymond
Just wanted to let people know that our surgeons have set the dates for the next few monthly chats. These dates are December 10, January 14 and February 11. All chats are at 9:15PM EST.
Please contact vbrady AT lifebridgehealth.org for additional details.
I just found this site, and it looks like a great source of info. I've been lucky enough to know a thirteen year old boy with a congenital shortened femur. He had a symes amputation at a young age, and has used an extra long below knee conventional prosthetic since then. He is a very active boy. He plays basketball and ran track last year.
I'm posting because myself, four other Purdue engineering students, and a prosthetist from Indianapolis designed and built a new prosthetic device for him last year. It is described at our wiki page located here:
