Woman with amputated leg due to rare illness shared with twin says she sometimes still feels her toes

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Twins Emilie Ostertag and Sophie Francioli (35) from Geneva, Switzerland, were born with the congenital disease tibial aplasia, a rare lower limb malformation. Photo courtesy @nous.jumelles/ mediadrumworld/ Magazine features
Twins Emilie Ostertag and Sophie Francioli (35) from Geneva, Switzerland, were born with the congenital disease tibial aplasia, a rare lower limb malformation. Photo courtesy @nous.jumelles/ mediadrumworld/ Magazine features
  • Twins Emilie Ostertag and Sophie Francioli (35) from Geneva, Switzerland, were born with the congenital disease tibial aplasia, a rare lower limb malformation.
  • The condition causes a malformation in the legs, mainly the tibia, which is either completely absent or malformed. 
  • Both women had to have their legs amputated as a result of the illness, but one says she can sometimes still feel her toes on the leg that's no longer there.


The congenital disease, tibial aplasia, causes joint and growth problems. While they both have physical disabilities, they have different cases of the same disease - Sophie has leg deformities on both legs, and Emilie has deformities on one. They also have four fingers and a split hand each.

Diagnosed with the condition when they were born, their parents had to make the difficult decision to have Sophie's leg amputated within a few weeks of her birth. 

"We are the first of the family to be twins as well as the first to have a significant handicap. We have always experienced a life situation that is not the same as other people," says Sophie.

"We don't remember when we were first diagnosed because it was when we were born, but we know our parents had to make difficult decisions from the very beginning of our lives, for example, my amputation."

twins, bionic, amputation, congenital disease, par
Twins Emilie Ostertag and Sophie Francioli (35) from Geneva, Switzerland, were born with the congenital disease tibial aplasia, a rare lower limb malformation. Photo courtesy @nous.jumelles/ mediadrumworld/ Magazine features

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Sophie underwent a femoral amputation of her left leg and was immediately fitted with a prosthetic limb. "I know my right foot will deteriorate in the future because the malformation is so severe, so I'm taking the opportunity at the moment to travel as much as possible and do everything I can before then," Sophie adds. 

Emilie was able to walk on her leg for a few years, despite the difference in growth between her legs which was balanced out by a compensated shoe. By the time Emilie reached 14, however, the difference was too much, and she chose to have her leg amputated too.

twins, bionic, amputation, congenital disease, par

She says some family members had difficulty understanding her decision to have her leg amputated, with her father worrying that if she regretted the decision, she would resent him for not having convinced her that she shouldn't do it. 

READ MORE | Artist opts to have leg amputated years after cancer op despite contrary advice, she’s much happier

Since her amputation, Emilie has experienced phantom limb syndrome - the phenomenon where patients experience sensations in a limb that doesn't exist - and reports feeling her toes on her right leg every once in a while.

The twins say they struggled to make friends and participate in sports as teenagers due to their amputations but have never let that stop them. They say they have made their amputations a strength rather than an obstacle and that even though it hasn't always been easy, now it's their trump card in life.

READ MORE | Woman loses her leg in crash after blind date drives drunk, then he forces her to marry him to avoid jail - here's how spousal privilege works in SA

Despite their optimistic outlook, things haven't always been easy, and Sophie experienced discrimination due to her prosthetic during an apprenticeship. An expert told her that she had been judged more harshly than the others as they didn't think she would be able to stand in a workshop all day - she has since proved them wrong in her role as an Orthopedic Technician for the last 17 years. 

Emilie says she struggled as a child after dislocating her knee in front of her classmates and had to be taken to hospital in an ambulance. Some of the children went on to make her life difficult as a result. 

READ MORE | U.S. Open finalist Kgothatso Montjane made SA history at the tournament - 5 things to know about the wheelchair tennis star

"In the near future, I will need a hip prosthetic as I have dysplasia in my hips," says Emilie adding that her son, Tobias, also has inherited some hand malformations. "He has four fingers on each hand, a crooked finger and split hands.

"Our plans for the future are to continue our Instagram account, @nous.jumelles, and help give strength to people in the same situation as us. The advice we would give to someone in the same situation as us is don't give up, you have to set goals even if they seem impossible," the sisters say.

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CREDIT @nous.jumelles/ mediadrumworld/ Magazine features

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