It has been a long time that I saw your post. The reason I am sending a line is that I am a left leg PFFD that have a birthdate in march of 1973 and spent 21 years going to the Shriners Hosptial in the Twin Cities in Minnesota and saw you were looking for information on just PFFD in general I hope this gets to the correct place for the correct people. I am not real experienced with the blog stuff and this type of stuff anyway. So if this gets to the correct people I would like to help you with anything I can. Send a line to Bowhunter73 I am a 35 year old man that spent lotts of time in the shriners in MLPS. I forgot to say that I am in Cedar Falls Iowa
Great you found the site
I found this site by accident many years ago and since then, it's transformed into something pretty incredible.
I went to the Shrine for 21 years too, although the hospital location was different. What was your experience like? I ABSOLUTELY LOVE THE SHRINE. I'm lucky enough to live close to a Shrine hospital and try to stay in contact with the people over there.
Shrine
Untill the last couple of years I did not know just how great the staff and all involved were I did'nt want to be there when I was but they did the best that they could for a little kid you figure this stuff out once you get older. I would have to tell you the first time I had surgery at the shriners was in 1984. It is kind of funny because I still can remember the night nurse staff were all into the olmpyics. I have not been back in quite some time due to location is 4 hours away. I got on here doing research on my condition and singed up. I never had any one repley so I had not been back. I am going to have to have back surgery to try to help with severe back problems in the near future. I have been out of the shrine for 14 years now it is just crazy around my area doctors just don't know really anything about PFFD so it is a chore. I do get more questions now than when I was young people all see the vets comming home on legs and they just can't understand that my hip is all messed up and now I have to have my back fused and discs worked on. People see on tv the vets come home and get walking right away on the C-Legs and figure I can bolt one on and away I go. I know it is inpolite but I am 35 what is your age that kind of tells me what type of treatments you might have had. Thanks for dropping me a line I had not been on in a long time. I will start to check the site out alot more. Also sorry for my bad spelling and gramer.
Jeff in Iowa
MN Shriners
Our son was born in May, and has pffd in his right leg. We actually have an appointment for the shriners in Minnesota in October. I am not sure really what to expect as we have not really been to any specialists yet. Our doctor in Marshfield, WI has not seen this before and so he was not really any help. I have heard good things about shriners, so if you have any advice on what to expect or what types of questions to make sure to ask, that would be great. What types of things have you had done at the shriners facility? If you want, you can email me directly at deb_zurawski@yahoo.com. I am using my husband's account since I can't seem to set one up for myself (I am having computer issues). We are actually in Stevens Point, so we are about 4 hours away from Minnesota.
PFFD
If you are interested in options contact me at msteiner4@cfl.rr.com. I have an 8 year old with PFFD type C and have found serveral resources that are helpful. Best of luck, M
I got a son with Pffd
Iam a mother of three. I gave birth normal for my two kids but my third son who is now nine years old got a unilateral PFFD. How do you encourage your kids who has that kind of abnormalities. Thank you.
Hey
Just a short note to say I have PFFD on both sides and the best thing my parents ever did for me was to treat me like they did my other brothers and sisters.. Dont tell them they can't do anthing. Encourage them to do what everyone else is doing. I have eight brothers and sisters and I was treated the same so everyone else in my family. If I said I can't my dad and mom would simple say you haven't tried yet. I soon learned that I could do it all. I am now a mother of two that are mine and three others that are foster children. I love what I do even though I have days that I have a lot of pain that I want to stay in bed. The older your son gets he will learn what he can and can't do. Love him and encourage him to do it all. I am so blessed now that I wouldn't ever want to be tall. My hubby is tall and I am not but we love each other and encourage each other in different ways. It was good to read about your son. Only God can give us the strength to do what we need to in life. I am thankful I had parents who loved me and taught me that there is nothing I couldn't do.