34 years ago I was born with BPFFD level D. The Dr's informed my parents that I would never walk. However no one ever told me that. So I learned to walk in my own time. After learning to walk, I learned to run, rollerskate, ski, ride a bike, be a cheerleader, play volleyball, drive a car....etc. Why did I start out my very first entry on the website listing what I was or am ABLE to do? Because that is how I have always wanted to be viewed. For my abilities not my disabilities. I stand at 3'11walk pretty darn different and I have been stared at, made fun of, and had every crazy comment and/or question you can think of thrown at me. Do I hate it? Absolutely, do I have days that I want to curl up into a ball and cry, I sure do!! Would I change the fact that I have this birth defect? Not a chance!! I suffer from severe chronic pain, in my back and in one of my hips. I tire very easily and use a wheelchair as needed. THAT I would change, I would change the pain but not the difference. I know that some day I will need the wheel chair more than just periodically however I have not yet come to terms with that. It angers me what I have to deal with but I feel that it has only made me a stronger person. I am also blessed with a wondeful family, friends, an amazing husband (of average height, in case there is any question) ;) and I have been blessed with a beautiful little boy, now 2 years old. I am so happy to have found this website, to have the opportunity to talk with other people that understand......that just know. I have millions of questions I would like to ask and in turn I am willing to answer any that might come my way. I am so looking forward to connecting with others. I guess my first question is in regards to pain issues. As I stated I have chronic pain, I have had it for years. I was wondering if there are any other people with BPFFD or PFFD that have pain issues? If so what? And what has been done to help?
looking foward to meeting everyone!
Comments
Loved your posting!
I am the mother of a 3 1/2 year old with bilateral PFFD. I have so many questions about her future and what she will and will not be able to do. Right now she cannot walk independently and uses a walker but we work everyday on getting those first few steps. I worry about her height and being so short...but does that really matter if she can't stand and walk by herself. We are at a point in treatment where we have to really decide what to do as far as lengthening or not, one leg or both, prothesis or not. It's just so nice to hear from someone else that has paved the road for her journey ahead. Thank you, Candice
The pain issue...
Having our daughter be treated for PFFD we have heard that PFFD can cause some mis-alignment of the knee/hip/ankle that can cause uneven wear of those joints over the years which can be part of the cause of the pain. As the wear progresses you may automatically bend your back in certain ways to compensate and that also can lead to more pain. Not being a doctor I can only share what I have heard from the different doctors we have seen, but it probably wouldn't hurt to have your walking motion examined to see if there is something they can do to redistribute the pressure points to ease the pain in your back and hip. It may be a simple shoe lift, or brace, or even some physical therapy that can help, but again not being an actual doctor I am just sharing what I have been told. For our daughter McKenna we have been seeing Dr. Paley in Baltimore, Maryland and you can chat with his staff at 1-800-221-8425. Hope this helps in some little way.
Sincerely,
Chuck, Karla, Dylan & McKenna
Thanks for sharing your story!
Hi! I'm a 31 year old female with BPFFD. I also suffer from chronic pain, primarily on my left side, which is the side that had the length difference.
I wear a one-inch shoe lift, a brace on my lower leg to help stabilize my ankle and I walk with forearm crutches for most day to day activities. I also use a wheelchair for longer distance activities (going shopping, museums, etc.). Until about 2 years ago, I was mobile without any aids except for long distances. However, the pain just got to be too much. Using the crutches has cut down on my daily pain considerably. I still have it, and occasionally I get really, really bad pain (but that's usually because I did something that I probably shouldn't have: i.e., walked around my classroom too much without my crutches, used my crutches when I should have used my chair, etc.). I take Aleeve on an almost daily basis and I have a prescription for Darvocet for when things are bad. My pain tolerance is pretty high, as I imagine yours is, and I would say that I use the Darvocet maybe 8 times a year, if that.
Thanks to this site, I've found out that I'm quite tall for someone with BPFFD :) I'm 4 ft. 5 in.
When I was 11, I had an Ilizarov leg lengthening to "fix" the three inch discrepancy between my left and right legs. Prior to that surgery, I was quite active. I was able to ride a bike (albeit with training wheels because of balance issues), I could "run" in my own way and I did most things that most other kids did, maybe just differently. I had a host of complications from the lengthening, and I really believe that if my case were presented today, that I would not be considered a candidate for lengthening.
Feel free to write back here or contact me privately!
Linda
Pain issues
Hi there, i don't know your name? welcome to the website. I have BPFFD, and am missing half my left arm. Not sure which Aitkins level, as over here in the UK they used a different classification system for mine, some Australian doctors research, Torode & Gillespie group I i think.
I get pains on my left side . I don't use any leg prosthesis and am a full-time wheelchair user. I had a through knee amputation on my right side aged 9 and took the decision to stop wearing my leg prosthesis aged about 12. I use an arm socket on my arm stump to help propel my wheelchair. My right hip with the plate/pin in it doesn't give me any trouble, it's all on the left.
The pain i get i suppose would be classed as chronic, because i have had it for years, but it is all aching pains, fortunately never bad enough to take pain killers. It isn't all the time, but everyday i'll have something that aches.
I know imy weight is the main problem that doesn't help me, i weight bear on my left leg to get in and out of the car, tranfer in & out of my wheelchair, sofa etc, so my ankle/knee/hip takes a lot of strain. If i could stand i'm 4' 4.5" and weigh nearly 300lbs. All my weight pushing down on my left hip is probably why it aches like it does. In my case I need to loose weight, and lots of it! :) i'm sure it will help. My butt aches quite a lot sat in the chair so much, and at night if i sleep on my left side it ends up aching badly, so right side for me.
I would imagine your hip and back pain is bad because you've remained walking all your life. If i'd walked on my legs longer, i'd probably be worse now at 32. It definitely does make us stronger people, when it comes to the time when you have to use the chair all the time, it is just one of those things you'll have to be strong and come to terms with. I've been in the wheelchair now for 20 years, that's the way it is for me, i can't really remember it any other way. Yes people stare and whisper, more fool them, ignorance, i know i look different, that's just the way i am. We may have popped out onto this earth different, but hey, what's normal. You have your life and you get on with it. I always think to myself there is always someone in a worse situation than you, be thankful for what you do have, and i do.
Good to read your blog.
take care,
Dave Bailey
Hi- Great to see you posted
Hi-
Great to see you posted here on the website. I am excited to share more about our daughter, Lilly with you and learn about yourself. .
I would also like to give you our home phone number 507-787-2259. Feel free to call and talk anytime. We would love to meet others out there too. Being in People magazine this week, we were hoping that it would open the doors to meeting kids/teens/adults with PFFD. Please call or email and we can share…
Lilly is 6 now and will be in 1st grade this fall. She is in swimming lessons now and also dance and horseback riding lessons. In the winter she also takes on downhill skiing. She is not letting anything stop her. She is a fun big hearted girl that loves people.
I hope to keep in touch!
Love,
The Stiernagle's
pain question
Hi--I am very lucky -- I only have pain when I overdo it. I am 4'2'' tall and weigh about 105 pounds and I have bi-lateral PFFD -- both legs are involved, but since they are pretty "even" (it seems to have happened evenly on both sides) I can get along pretty well. I really don't think there is too much we can do for the pain -- tylenol works -- but I would imagine if my pain was chronic I would be looking for something a little more substantive to help.
Would I change the way I am or my life -- no way! I think your attitude is AWESOME!
Sheila
WoW!
WOW!! we aren't the only ones!!! My new Baby was born with BPFFD, no femur, no fibulla, no hips, and no arms ...whatsoever. Help. I need information from people who have the same. I`m interested in the possibilities of her walking. She is wonderfully smart...sometimes for her own good.... and she is super healthy! I`m so relieved to see everyone on here! I`m so excited to see what her life will be like!!
pain issues
I am 32 and have had many wonderful and not so wonderful experiences w/bilateral PFFD throughout my life. I would not change anything about the way I am. I was the same... took a long time to walk, but my parents never accepted what the doctors said, that I would never walk, etc... I roller skated, skate-boarded, tried gymnastics, played softball, etc... I almost feel like I'm a little more limited since I started wearing a prosthesis in 1st grade, but have never really felt left out over it. I went the the Shriners in Houston until I was 18 and really haven't had much need for medical treatment since then. I have had two prosthetics made since that time period, one of which was in Austin, where I am now. I was not satisfied w/that one and experienced a LOT of hip and lower back pain as a result. I ended up a few years later going back to Houston to get my newest prosthesis. I do have osteoarthritis in my lower back, but the doctor I saw said it's due to my body compensating for the way I have to walk. More than anything, I have struggles with staph and strep infections on the leg I wear my brace, which results in missing work and not being able to get around without crutches. I am seeing an infectious disease specialist now after battling these for over 3 years and the ongoing antibiotics seem to help. Other than that, I have no constant pain.
I would love to be a resource for anyone on this site, as well as take recommendations for treatment, doctors, etc.... I have worked in the social work field with people with various disabilites for several years, and now work for Department of Aging and Disability Services. I am hoping to network with others with PFFD and also (hopefully) be a resource. I have never met another person with this diagnosis.
Hope to hear from someone soon.
-Jamie
jamie_1976@hotmail.com
Like you, I have lower back
Like you, I have lower back pain and my left hip hurts all the time. It really sucks but what options do I have? I take Aleve on a regular basis and I do have some strong medication for really bad nights (I have a really hard time getting comfortable at night.) But I just deal with it most days!