EB Hacks with Toni

EB Hacks with Toni

Hey guys, it’s Emily here from MiaThrives with special guest Toni!

During the EB World Congress 2020 in London, we had the amazing opportunity to connect with members of the EB community including Toni and her mother. Toni has Junctional EB and helps support other families. They are in the process of starting the first Debra South Africa.

To read more about the EBWC2020 click here.

Watch the full video down below or here.

“Hacks we don’t even realize we are doing” -Toni

Meeting others with EB it can be special to relate about little corks we have due to EB that we grow so used too. At MiaThrives we are firm believers that people with EB are natural problem solvers! Sometimes we get so good at problem-solving we don’t realize that to others it might seem like a hack.

Toni and I were taking a lunch break and strolling down the street, we passed a stand selling soft drinks. We laughed about both not being able to open them due to not having fingernails. Toni uses blunt knives and I often use a spoon or even fork! In my day to day life, this is a conversation I have never had with anyone before. It made the world feel a little bit smaller meeting a friend from the other side of the world with some similar EB struggles.

EB Hacks with Toni

Positive Points To Note From Use:

  • Using a blunt object to open a can takes the pressure off your fingertip
  • Even if you do have a nail it can help prevent from blistering under your nail
  • You can carry a utility tool\utensil in your bag

Side Note!

As I am getting older I am also feeling more confident asking for help when I need it. During the conference, they were handing out bottles of water. I often carry a rubber elastic band in my purse to help me open it with less friction but had forgotten to pack one. I asked many people throughout the four days to please open something for me and without a moment of hesitation, people helped. This is something I would have been self-conscious about in the past but have since realized that people don’t mind helping!