"Customization brings color to my life" - Conversation with Véronique

Véronique, 55, has courageously overcome seven amputations due to scleroderma, a complex and incurable disease. For her, the decision to opt for amputation represented a new beginning, putting an end to years of pain. She shares her journey with us, evoking her determination and willpower, inspiring those around her and spreading a message of optimism. 

Hello Véronique, can you tell us about your story? 

My name is Véronique, I'm 55 years old, and I've had seven amputations due to a disease called scleroderma. Initially a tibial amputation, I then underwent a femoral amputation. Scleroderma causes skin problems that lead to wounds that are difficult to heal. These wounds started on my fingers, then spread to my legs and led to osteitis, which is a bone infection. To try and heal myself, I went to Georgia to undergo phagotherapy, a technique that uses bacteria to stop bone infections. This method didn't cure my disease, which is incurable, but it did stop the bone infection. My first amputation was in 2010, and since then I've had seven amputations, about one every two years.

How did you go about customizing your prosthesis? Was it something you did right from the start or later on in your career?

I have to say it was pretty straightforward for me. Right from the start, I chose foam-free carbon dentures, with colored sockets made by my prosthetist using U-Exist fabrics. I've been customizing my dentures for almost six years now.

How do you choose your prostheses?

In general, I choose prostheses that are aesthetically pleasing, yet discreet. I'm currently renewing my prosthesis, and have opted for a Koi Carp design to add a little variety, which I really like.

What is your relationship with your prostheses? Is it more intimate and personal, or do you like to have them noticed?

I show them off all the time because I simply never wear pants for practical reasons. Whether I'm wearing a skirt, dress or shorts, I'm not ashamed to show off my prostheses. On the contrary, I think it shows others that disability doesn't prevent us from leading a normal life. People's comments are generally benevolent, and I've very rarely had to deal with negative remarks. Because I live it well and have a smile on my face, people approach me more easily. I'm like that, I take things in the best possible way. 

Do you think that customizing prostheses brings a different perspective on disability? 

Absolutely, colors and personalization attract people's attention. During my rehabilitation sessions at the hospital, I notice that most patients wear more sober outfits, like jogging suits or jeans. Personally, personalization brings color to my life. In the early days, however, I wore carbon prostheses, which I even found rather elegant. I didn't mind, but when I found out that you could do things differently, I liked it even more. 

Why did you want to share your story?

I simply want to encourage people not to hide their condition and to find pleasure and creativity even in difficulty. Adding color to your life can make all the difference!

Is decorating your dentures almost like an accessory? 

Yes, it has become an accessory for me. I try to make this aspect of my life as happy as possible.

What advice do you usually give to people who have been through the same thing as you?

I always advise my fellow rehabbers, especially those with disabilities similar to mine, to keep hope alive and believe that they can achieve things. Having originally been a caregiver, I better understand the challenges they face; you can't imagine what it's like when you haven't experienced it. Despite the difficulties, it's essential to constantly challenge yourself. I believe that my mental strength, the origin of which I don't know, has enabled me to overcome obstacles and inspire optimism in others. You have to be willing to do it. I never thought I'd be able to have a car and get around on my own, and even though I get around all the time in my wheelchair because it's complicated otherwise, I do everything I need to do on my own. 

What was your acceptance process? 

My leg sores persisted for seven years before I agreed to have them amputated. I tried all treatments, transplants and other medical experiments to no avail. Finally, one day, I made the decision to amputate. And I think it was from that moment on, when I said "yes", that I was able to face what was to come. This "yes", this decision that was finally mine, was the trigger for my recovery and the start of the rest of my life.. The operation and the period that followed were traumatic, that's a fact, but seeing the improvements brought me happiness. Today, although my life has changed, I continue to carry out many daily activities, and I'm adapting to my new reality with more determination than ever.

Do you now feel that your life is similar to what it was before?

Yes, with a few exceptions. Of course, I no longer work, and my days are often punctuated by numerous medical appointments. But I still go about all sorts of activities, like picking up my groceries at the supermarket drive-through, going to the hairdresser, spending time with my friends, shopping... I lead a perfectly normal daily life. Of course, I don't go to the ice rink or ride my motorcycle, but I do take part in other activities such as table tennis. During sporting activities, I'm advised to use a wheelchair to be on the same level as the others. Personally, I enjoy standing, as it takes me back to the days when I wasn't an amputee. Even my physiotherapist sometimes suggests removing the prostheses for exercise, but I prefer to keep them on, because even though they're prostheses, they're my legs and I want to do any activity with them.