Blog

Deived Elton

Deived Elton is 27 years old and was diagnosed with Wolfram syndrome when he had already developed diabetes, optic neuropathy and hearing loss. He was diagnosed with the disease two years ago by a geneticist.
Deived is full of pure energy! He is already married, plays piano and he is also a music teacher! He always tries to find services that can help him in his daily activities.
“I try to enjoy my life like most people my age, recognizing and accepting my limitations, but not surrending me to them,”, says Deived.
The Wolfram Inside is so happy to share the story about this talented pianist.

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Raquel Gebel

Raquel Gebel is a gorgeous 12-year-old girl who was diagnosed with Wolfram syndrome in the fall of 2010 when she had already developed diabetes mellitus type 1 and optic nerve atrophy.
Even being so young, Raquel is already blind in one eye and legally blind in the other one. She also suffers with bladder issues, severe migraines and hearing loss.
Despite having the symptoms caused by Wolfram, the little Raquel enjoys learning how to play piano and she wants to start learning Karate this summer. She is a special girl!
Raquel also has a personal assistant to help her in her classes. She is currently learning Braille to help her in her day-to-day activities. Raquel is a sharp girl!

The WolframInside is so happy in following the story about this warrior of a girl.

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Natã Trindade do Vale

Natã do Vale was diagnosed with profoundly deaf when he was just 7 months. With 3 years old he received a cochlear implant on the right ear. Due to her deaf, Natã has not already developed her full speech and he has to communicate by pounds. Later, after start failing his vision, loss his hearing and after the diagnosis of diabetes mellitus type 1, Natã’s family – Janete, Gilson and Rafaela – received the worst news, when Natã was 8 years old – He had Wolfram Syndrome.
Natã goes to the visual adapting twice a week. He receives help of private tutors in his classroom and he also has been doing pedagogic therapist with a deaf teacher.
He is so sweet, very smart and an amazing boy! Currently, with 14 years old, he is learning some words to pronouce. Some specific words, for example: mom, daddy, sister, the name of his relatives, the name of his cats and some foods.
WolframInside is so proud of him! Congratulations!

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About Depression

Psychiatric symptoms are very common in Wolfram syndrome patients.
Researches on WS report that, many times, suicide attempts happen impulsively, in a moment of feeling extremely unhappiness. Changes in character, mood and variable in expression are also considered a consequence of WS gene.
As a Wolfram patient, I have already witnessed situations of depression. Unfurtunately this is very hard, but we are here to help each other and to be stronger together to face this battle.
The happiness might walk next to this terrible and serious ilness.
Together we are unbeatable!

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Wolfram Inside and its meaning

The choice of the name and the logo of the Wolfram Inside left me afraid since the beggining of the first project’s feature. But I was very lucky to have found wonderful people during all the created process. There were a lot of meetings discussing the name and the logo of the project but we always knew they appeared at the right time.

Until one day, Denise Lopes (creator of the logo and professional of graphic design) presented us an amazing and beautiful idea for the choice of the logo. The thinking of the W representing health beats is very touching and extraordinary. Yes, all Wolfram patients can live. Cheers to live! Choosing the name was more complicated but one day it arrived. I love an American TV series called Gossip Girl which has a character called Dan Humphrey who wrote a book called INSIDE. In this book, Dan wrote about how is into the world of the Upper West Side. I joined the book with my website where I would speak about how it is, inside, to be a Wolfram patient. That is why the name Wolfram Inside. Could you imagine, couldn’t you? Where we least expected, we found the best.

But these two componets were not enough. We wanted something else. Guess who entered the story later but had a crucial role to the project were Renata Leiria and Vini Marques (advertising executives professionals). They have created the moviment #WolframInside to promote the project on the social networks. And it was successful for the launch, and the results were more than hundred pictures posted on the social media.

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The Snow Foundation has joined forces with Belgium and France

The Snow Foundation has joined forces with Belgium and France to find the cure for Wolfram Syndrome. This is an exciting news in the world of WS. Help us to share this idea.

Visit: http://thesnowfoundation.org/scientific-call-proposals/

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Natã, another Wolfram Syndrome patient

It was about a year ago that I first met another Wolfram Syndrome patient, just like me. It was at a doctor’s appointment in São Paulo where I met Natã and his family for the first time. I can say this boy’s story is beautiful and it motivated me even more to move forward with my project and to help other people. After a year, Jeanete, Natã’s mother, reached out to me for help because Natã needed to get back to the doctor in order to have new medical tests and exams and also to have his vision checked but unfortunately they could not afford so many medical expenses. That is when we came up with the idea to raffle a Daily Rock’s guitar which had been donated to Natã. Just like Natã, I also had to return to the doctor and that’s when I finally had the privilege to meet, once again, this very sweet patient and his parents.

We are very grateful for the amount we were able to raise from the raffle tickets and generous donations which totaled R$ 6,121.00. Those proceeds allowed Natã to be seen by a neuro ophthalmologist on April 11 in São Paulo. The proceeds were used for payment of medical appointments, two sight exams: OCT and Evoked Potential, airplane tickets from Curitiba to São Paulo, 4 blood glucose control sensors called FreeStyle Libre as well as medications such as Idebenone, Puran and Risperidone.

Total value collected: R$ 4,634.00
Balance: R$ 1,487.00
The remaining amount is deposited in Natã’s saving account and will be used for his next appointment with the neuro ophthalmologist due next October.

Below you see the video of the raffle drawing.

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Release WolframInside – Share this idea

As well as Rafaela, other people live with Wolfram. Some are diagnosed too late due to lack of information, lack of knowledge and that is why the WolframInside was created. A website to inform, a project to help.

“There will be a space for me to expose my feelings, ideas, support people facing the same journey as me, and to bring a little bit of information and knowledge I’ve acquired throughout my trajectory” – Rafaela says.

WolframInside started on 07 December 2016, in a lovely party at the restaurant Dado Bier, in Porto Alegre, Brazil. The contribution of each supporter was essential to the success of the event. Now we need you to reach our goal. We are available for lectures, meetings and to inform about the Wolfram Syndrome. 

Help Rafaela to disclose the cause. Like, share, talk to your family and friends.

Check out the video of the release in its entirety and meet this idea:

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My History with Diabetes

There I was, a small 4-year-old child, lying in a hospital bed. Lost, afraid, anguished, and without understanding what was happening to me and around me, I just sought to look at my parents and seek reassurance.

The days went by in the hospital, and I understood a little more of what was going on. I already knew that I could not eat sugar, and I was getting used to the daily insulin injection, finger pricking, and the number of people coming to visit me.

After I left the hospital, my life has never been the same. I say that every stage of diabetes was a personal growth.

I was no longer the child who only cared about not missing the favorite cartoon on TV, but also had to remember to measure my blood glucose at the right time, administrate insulin after eating, change the catheter on the right days, and regulate my eating. Of course I have always had the help of my parents; I will never cease to thank them.

But over the years, I have become more and more independent and today I am very proud to say that I have traveled without them to many places and I have even participated in an exchange program. This is a great achievement to me.

My diabetes has gone through different types of treatment. As soon as I left the hospital, I used to take insulin injections every time I ate or had very high blood glucose. Then I took two small injections daily, one in the morning and one in the evening, always monitoring my blood sugar. By the age of six, incredibly, I started using the insulin pump, which was only recommended for 12-year-old children. Fortunately, I adapted very well to the so-called “my little box”, since I no longer needed injections, got insulin twenty-four hours a day and only changed a catheter every five days. Then, four years ago, the last discovery that changed my life came: a new insulin pump called “OmniPod”. Thanks to this little pump, I could live more independently, I learned to change the catheter on my own, which my mother used to change and administer the injections, then I could travel, spend more than five days away from my parents and stay as much as I wanted in the pool or in the sea! In addition, I gained a lot in quality of life and my diabetes became much more controlled.

Now here I am an eighteen-year-old girl who, looking back at that frail four-year-old, could never imagine that she would become a strong, independent, self-confident person.

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