Hi everyone,
my name is Ashley, I am 24 years old, and I was born with PFFD. I figured I would try to reach out to anyone with questions. I've never joined a site/forum and I know that in growing up I would have liked to speak with someone with my condition just to find out how they make it day-to-day. Just a little bit about myself. I have a degree in Biology and recently finished the Prosthetics Certificate program. My goal is to become a prosthetic practitioner. When I was younger I was a "Shriner's" kid and now it hurts me to know that due to the economy, various Shriners hospitals aren't doing so well. Well, that's just a bit about me. I am very interested in knowing others with PFFD carry out their lives or even the questions parents of children with PFFD have. If I can help in any way I will.
Comments
Hi Ashley!
I'm new to the site also, I've never joined one like this before. I've never put myself "out there" like this before, well not when it's concerning the fact that I have PFFD. I'm 22 years old now and have never had any prior surgeries. I tried to send you a message the day I joined actually...I don't think it worked, ha. I went to the Shriners hospital in Greenville, SC all growing up. I haven't really gotten to talk to anyone who had PFFD. I would love to get to talk and hear a little bit more about you. It's nice to meet people who actually understand what this is and how it affects people.
help for new grandson
I have never heard of PFFD, my grandson was born 8/3/09, we go Monday for orthopedic consult and have no idea on what to ask. A family member has offered to a friend that's al Shriner member and see if they might help, but the our Pediatrican said to wait to see the specialist, that it would involve too many trips and consults at other places. My daughter is amazing and is handling things well, her husband is supportive now,and they have 2 other children. BUT there is alot of stress.
My question is. Does Shriner's hospital in SC still work with pffd, and would this be better than some where like Baptist, UNC or Duke? We live in NC.
I know we are going to be ok, and God truely doesn't put more on us than we can handle,,,,I'm just human and need to reach out to someone that's been there. If I can prepare myself then I can be stronger for Michael and my daughter and family.
I'm a nurse and cope better with details and facts, but 1st and for most I'm a mother and grandmother.
your grandson
Shriners in SC should treat pffd. Other Shriners locations do.
You mention that you want details and facts about pffd. Have you read the "guide for parents" (http://www.pffd.org/a_guide_to_pffd) located on this site? It has lots of helpful info.
Beth
help for new grandson
Shriner's in greenville, sc does work with pffd, my daughter is a patient there. Dr. Westberry worked with her and we like him very much. He has made it so that our daughter can walk. If you don't mind me asking what kind of pffd does your grandson have. Courtney's right thigh did not grow and her right leg is only half the lenght of her left leg. If I can help anymore plesae let me know.
In your shoes
Hello I totally understand what your are going through. I gave birth to a beautiful baby boy on July 9th 2009 and he too has PFFD Class C. We have a 3 inch difference in his legs. It is all very overwhelming and we are in a world wind visiting doctors and deciding what is the best option for our son. We did not know until birth we would be faced with this challenge but we thank God everyday for his health and are reassured with his smile. We are blessed to be in a technical world where great things can be done and these children with PFFD will walk and carry on a normal life. We have seen a Genetic Doctor and what a blessing it is to know that his leg is all we are dealing with. He is a very healthy normal little boy. My advice is to treat him as nothing is wrong and encourage the other older children to do the same. I have a 4 year old son at home and he is my biggest support. I have to be strong for him and he sees nothing wrong with his little brother. At 6 weeks we had a hip ultrasound to see what we are working with and now we have been in touch with Dr. Standard in Baltimore with the Rubin Institute for Limb Lengthening. We are hoping Owen is a candidate for this process and are not set on a prosethic leg just yet. Not sure when our appointment will be we just started this process this week. It is going to be a long challenging journey but we are welcoming it with open arms. I am here to be of any help that I can. We live in Tennessee. Good luck and stay strong and LOVE that baby boy!!!!
Please contact Dr. Dror Paley
Please contact Dr. Dror Paley In West Palm Beach fl. My only reget is that we did not find and contact Dr. Paley earlier is Justin's life. We went to Shriners for several years, as did several of our pffd friends, We did not get many choices from Shriners Greenville. Amputaion/ fit wit a ptothesis.
I am thankful that they provided my son with a prothesis.
We also live in N.C. Western. Would love to talk with you and your family. Would love for you all to meet Justin. He is 3 weeks post surgery with Paley, He had the Super hip/ knee. Will start lengthening in about 9 mths. Please know your in our thoughts and prayers as you start this journey.
Please feel free to contact us
cgustavson@verizon.net
or 828-645-4904
Cindy and family
Previous patient of Shriners
I used to be a patient at the Shriner's Hospital in Greenville, SC. I'm from Florence, Al. As a patient from there I will say that they are very good at supplying the right prosthesis for patients with PFFD, however they will most likely push amputation as they did with me during the entire time I went there. I believe they are too old fashioned with their treatments...I never agreed to amputate. It was "frowned upon" not to amputate. I'm 22 years old and no one ever told me I ever had any other options other than amputation until a few months ago when I discovered Dr. Dror Paley, who does limb lengthening. He specializes in PFFD. I set up an appt. with him thinking he still couldn't help me because the Shriners were SO negative about my condition my entire life. My length difference is 10 inches, my knee is very unstable and my hip didn't develop properly. My appt. was on 8/07/09, it's a day I will remember forever because it was the day someone FINALLY offered me hope. Dr. Paley will be able to correct my hip AND knee in ONE surgery. It will be followed with lengthening. I should have a total of 3 surgeries and when it is all over...I will be able to walk on both feet. It's unbelievable. My entire life changed that day. I wanted to reach out to you (& anyone else I can) because whenever I see comments like yours it breaks my heart to think that someone else may go as long as I did without knowing all of their options. As someone who has lived with PFFD my entire life, I STRONGLY recommend at least setting up an appointment with Dr. Paley to see about treatment. If I had known he had existed sooner I would have had surgery a LONG time ago. The good news is everything is advanced now with technology and treatment. If you ever have any questions whatsoever please please feel free to contact me on here or at babybrunette0819@aol.com.
Praying for you
-Julie
Update on Michael Cole
Our boy is at Dr Paley's today. xray's taken showed a possible different classification. Type 3 instead of Type 2b...My daughter is concerned, but hoping MRI at 18 mos will be encouraging. We had hoped to return to NC for the prosthetic Rx to be done due to cost and as all of you know...trying to afford to best treatment for your child. This is the part that is so frustating. She had some help, but not in Florida. but they hopeful. Do you know of any place closer than Fl. for these to be done. We still want to stay with Dr Paley. But we will have to find a way to go back in 3 weeks. HOW does the average family do this. Someone must work? This is just the start too. I pray GOD's plan is to lead us in this direction, and if not the wisdom to know his will.
will I'm rambling. Just don't know how to help.
Average family
I have PFFD and I'm the mom of 10 kids of which 4 are special needs kids (through adoption). I think we are an average family and "how it is done" is not a simple question to answer. I think the best answer is..you piece it together as you go and extended family and friends must help. We depend on an aunt who stays at the hospital with our kids when we cannot be there and other family members who help with the kids at home. It is a group effort. As far as the costs....you need resources that a good hospital social worker should be able to connect you to...just spell out your exact needs whether they be travel, meals, medical bills or durable medical and prosthetics.
michael's update
We got back yesterday from Dr Paley's with what we feel was great news, Michael will beable to have a super hip 1. The surgery will be after the first of the year. This one will be scary, but I think the lengthing that will follow will be harder from what Dr Paley said.
I don't know how we are going to do it all, She is a single mom, and has to work. Hope for some input on how everyone copes. how do you keep your job, insurance and do what is best for the child??
We and he are stronger than you know
Hi,
sorry for the late response. You have probably already found ways to adjust but you asked for any assistance and I don't mind helping. There are so many options out there for those of us with PFFD. While Juliem decided not to amputate, I decided to go along with the amputation and it was a decision my parents waited for me to be old enough to make. I haven't looked back since. The had my amputation the summer before I started 7th grade so that would put me at about 11 and now I'm 24 and feel as though I made a decision that fit me. I know that with this being new it's hard to know what to do but know that Michael is stronger than you know. Kids are resilient. Nothing stood in my way when I was young, everything I wanted to try I did. I'm not sure about the other Shriners locations but if they are anything like the Shriners I attended as a child then I feel they will accomodate your family as much as possible. The doctors will give their opinion of course but if they see you believe in something they listen. When I was deciding whether I wanted to have the amputation they gave me a list of contacts of families who have had children to go through the amputation and I was lucky enough to meet with one of the families and get and understanding of the decision I was going to make. The prosthetics field right now is so much more advanced than it was when I was younger and if contantly improving. Michael will have so many options it will blow your mind. If there is anything else you want to know feel free to ask. I hope mine and all the other comment prior have been helpful.
Ashley