GUEST POST : My PFFD Journey
Posted by Annie Bremmins on June 22, 2018
Picture by Thomas-Soellner from iStock
In this blog post, we’re talking to Amy from A PFFD Journey who blogs about her life as an amputee living with PFFD. Amy’s fantastic blog aims to share her experiences to raise awareness of the condition and help others going through similar.
You can check out Amy’s thoughts through her Twitter and Instagram.
For our readers who don’t know, could you give a brief overview of what PFFD is and your history with the condition?
Proximal femoral focal deficiency (PFFD), also known as Congenital Femoral Deficiency (CFD), is a rare, non-hereditary birth defect that affects the pelvis, particularly the hip bone, and the proximal femur. The disorder may affect one side or both, with the hip being deformed and the leg shortened.
Because of this condition, I have had to wear a prosthetic leg from birth, and undergone operations to fix the deformed leg including having the foot amputated.
Do you face any daily problems that could be overcome with better accessibility? If so, what are they?
I have to wear a prosthesis, sometimes use crutches and other times use a wheelchair. I have the toughest time with accessibility when using the wheelchair – it seems that lots of places still aren’t fully accessible and I have struggled opening doors for myself when in my chair.
I think it should be mandatory for all places to have a button easy for disabled people to press that makes the door open for them.
In your experience, what do you think about the general public’s view of disability?
I think the general public are very understanding towards disabled people and I feel very lucky to be able to say that I have had only a small number of bad experiences.
I do however feel as though sometimes the media seem to portray disabled people as not wanting to work and just wanting to live off their benefits, which of course is a ridiculous statement as myself and many other disabled people out there are desperate to work, lots just have a really hard time finding a workplace that accommodates them and their disability.
Have you used any mobility aids that you would recommend to other people with disabilities?
I find my wheelchair to be extremely helpful when I really need a break from wearing my prosthesis. I’d recommend that anyone with a disability that affects their mobility to make sure they do have a wheelchair at home – you never know when you may need to use it as I know from experience it’s very easy to tire yourself out and cause lots of pain accidentally.
What advice would you give to other people living with PFFD?
Meet as many other people online or face to face with PFFD as possible! I feel like I had such an isolated childhood because I never knew anyone else with PFFD. I felt like the only disabled child around.
We didn’t really have social media but now that it’s so easy, please use google and contact as many others with the condition as possible so that you can share experiences. I’m always happy when someone with PFFD contacts me!
Finally, on your blog, you mention how much your optimism about living with a disability has improved. What encouraged you to build your self-esteem and what do you think could be done to help other people living with disabilities boost their self-confidence?
I think sharing my story and starting my blog was the thing that really helped me build my self-esteem. It felt so rewarding and therapeutic to chat to others that were in a similar position as me!
I also started to realise that disabled children may look up to me as someone they can relate to and I wanted to show them that being who you are is 100% perfectly fine. I wanted to show them that they should be proud and never ashamed!
I’d advise anyone struggling with self-confidence to confide in someone that you trust, even maybe someone that has a similar disability to you. Sharing experiences and being there for each other so much. In fact, I think creating my blog was the best decision I ever made because I get to chat with fellow disabled people and offer them a friend to talk to in me every day!
If you want to share an opinion or have any similar advice to offer, get in touch via our Facebook! Thanks again to Amy for the great contribution.