I detta avsnitt träffar du Rafif Makboul och Maria Lindvall, ordförande respektive ledamot i den nystartade Patientföreningen för Duchennes och Beckers muskeldystrofi. De lyfter och diskuterar frågor som är viktiga för patientföreningen, för dem som föräldrar och för alla som på olika sätt påverkas av Duchennes och Beckers muskeldystrofi. De hoppas att detta kan bli ett viktigt forum för familjer där de kan dela sina erfarenheter. De kommer att arbeta med stödjande insatser, inte minst för familjer med nydiagnosticerade barn, så att de kan få det stöd som Rafif och Maria själva saknade när deras barn fick diagnosen. I samtalet får vi veta mer om varför det är viktigt med en patientförening och vilka tankar, planer och visioner som föreningen har just nu och för framtiden. Mer information om Patientföreningen för Duchennes och Beckers muskeldystrofi finner du på www.facebook.com/PatientforeningenDBMD
 
Det här är en poddserie om Duchennes muskeldystrofi, en genetisk, progressiv sjukdom som främst drabbar pojkar. Varje år föds 10 pojkar i Sverige med Duchennes. Att få en tidig diagnos är viktigt för att kunna initiera vårdinsatser och stöd så snabbt som möjligt. Tidiga insatser kan fördröja sjukdomsförloppet.

I serien möter du läkare och experter på Duchennes muskeldystrofi, patienter och anhöriga som lever med sjukdomen, samt andra professioner och organisationer som har stor betydelse för de drabbade och deras familjer på olika sätt.
 
Podden har producerats av Comma och intervjuerna är gjorda av Merja Metell Suomalainen. Poddserien har producerats med ekonomiskt bidrag från PTC Therapeutics.
 
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Avsnitt #9: Patientföreningen för Duchennes och Beckers muskeldystrofi

I detta avsnitt får vi träffa fyra unga, fantastiska män som alla lever med Duchennes muskeldystrofi, och som genom att följa sina intressen utvecklat spännande karriärer. Chanserna i livet får man inte – man måste ta dem, säger Felix Magnusson, nordisk mästare i el-innebandy som siktar på att bli sports manager. Björn Jönsson är egenföretagare med ett stort engagemang inom bland annat SMDF (Stiftelsen för muskeldystrofiforskning). Han arbetar också med gamingutveckling under devisen att underhållning ska vara till för alla. Vi beger oss till Reykavijk på Island, där Guðjón Reykdal Óskarsson, forskare inom sitt eget sjukdomsområde - Duchennes muskeldystrofi, berättar om hur han kom fram till att det var just detta han ville ägna sig åt. Avslutningsvis får vi också möta en svensk sportprofil, Philip Jönsson, som representerar Sverige i Paralympics i Tokyo 2021. Vid inspelningstillfället befinner han sig mitt i uppladdningen, och då kunde vi bara ana att han skulle ta guld och slå paralympiskt rekord!

Detta podcastavsnitt spelas in i samband med World Duchenne Awareness Day (WDAD) som inträffar den 7 september varje år.

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Avsnitt #10: Duchennes muskeldystrofi – att hänge sig åt sitt intresse och att nå sina mål

Listen to Sigge, 16, and his dad Martin Stengård, who talk about how Sigge has developed from being introvert and scared of being outside his comfort zone, to quite the opposite. Step by step he has increased his confidence through online gaming. Today, Sigge is one of the members of the unique para-esport team “ParaGhost”, and Martin is the manager. The team has 5 members – all living with DMD – a manager (Martin) and a coach. From being quite isolated, today Sigge has the courage to be very active and can easily present for hundreds of people! Gaming has been very beneficial to Sigge, also thanks to his dad’s involvement in ensuring a safe gaming environment. The presence of an adult/a parent, to moderate the discussions is something Martin strongly advice.

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Episode #10: To be pushed out of your comfort zone – from isolation to achieving personal growth

In this episode, Professor Thomas Sejersen from Sweden talks about the symptoms and early diagnosis.

This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.
In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the interviews are made by Merja Metell Suomalainen. The podcast has been produced with financial support from PTC Therapeutics.

Episode #1: DMD and the importance of early diagnosis

In this episode, Malin Kvarnung, MD and PhD, from Sweden, talks about genetic diagnosis and genetic testing. You´ll also meet Professor Már Tulinius from Sweden.

This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.
In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the interviews are made by Merja Metell Suomalainen. The podcast has been produced with financial support from PTC Therapeutics.

Episode #2: DMD and genetic testing

In this episode, you'll meet two of the most distinguished researchers in the field of DMD, Professor Annemieke Aartsma-Rus from the Netherlands and Assistant Professor Luca Bello from Italy. They talk about the importance of awareness and how international collaboration can find ways to detect the diagnosis earlier.

This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.
In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the interviews are made by Merja Metell Suomalainen. The podcast has been produced with financial support from PTC Therapeutics.

Episode #3: DMD and an international perspective, part 1

In this episode, you'll meet two of the most distinguished researchers in the field of DMD, Professor Annemieke Aartsma-Rus from the Netherlands and Assistant Professor Luca Bello from Italy. They talk about the importance of awareness and how international collaboration can find ways to detect the diagnosis earlier. You´ll also meet Professor Már Tulinius from Sweden.

This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.
In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the interviews are made by Merja Metell Suomalainen. The podcast has been produced with financial support from PTC Therapeutics.

Episode #4: DMD and an international perspective, part 2

In this episode, Robert Steen from Norway is sharing some of the learnings he made with his son Mats, who lived with Duchenne muscular dystrophy. Mats mostly sat in his basement apartment behind rolled down curtains and played computer games until late at night. To the great sorrow of his parents, he isolated himself and did not want to go out to meet people. After Mats passed away at the age of 25, the parents found out that he had had a very rich social life in the gaming world. This was a wake-up call for them.
In this podcast, we are invited to an area of life that many parents are not aware of. The virtual gaming life. At the funeral of Mats’, the family got to meet some of his closest friends for the first time. Friends that had not only been very meaningful in Mats’ life, but he had also been an important person in their lives, in a world where disabilities and age do not exist.

Episode #5: “Gaming is not a screen, it is a gate to the world”

This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.

In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the interviews are made by Merja Metell Suomalainen. The podcast has been produced with financial support from PTC Therapeutics.

We're also producing a Swedish version of this podcast, Känn igen Duchenne.

Episode #10: To be pushed out of your comfort zone – from isolation to achieving personal growth

The podcast series Take on Duchenne

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