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Episode 33: Natalie Hayden - Crohn’s Disease

Crohn's Disease is extremely unpredictable, and very hard to manage. Natalie was diagnosed with it just as her career was about to start. She didn't let it stop her; she decided to follow her dream of becoming a TV anchor no matter what. It wasn't that easy. She recounts episodes of great struggle and how difficult it is to manage the pain linked to Crohn's. Though the disease has shaped who she is, it does not define her.

The song Natalie chose is Swim by Jack's Mannequin.

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Sylvain Berthelot Sylvain Berthelot

Episode 32: Gary Ho - Gout

Gary suffered from Gout for 16 years before getting a diagnosis. The disease affected him so badly that he had to walk with crutches. He shares how he advocated for himself to finally get a diagnosis and the positive impact it had on his life. We also discuss how to prevent Gout flares, through diet and medication.

This episode is very personal for me, as I also suffer from Gout. I share my own experience, which is very different to Gary's.

The song that Gary chose is Hi Ren by Ren.

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Episode 31: David Hogan - Cowden Syndrome

David had confirmation of his diagnosis of Cowden Syndrome after his mum passed away with the same condition. David talks about isolation after being diagnosed, and the urge he felt to do something for the rare disease community. He now leads a group open to all men with rare disease, focused on mental health. Through this, he provides a platform for men to open up, or listen to others.

The song David chose is Dream Baby Dream by Bruce Springsteen.

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Episode 30: Richie Kahn - Wolfram Syndrome & Charles Bonnet Syndrome

Richie has a genetic condition called Wolfram Syndrome. The main symptom is a progressive optic atrophy that results in partial loss of sight in Richie's case. In conjunction with the loss of sight, he developed Charles Bonnet Syndrome, which causes his brain to see images that are not there, also known as hallucinations. Richie shares his journey with both syndromes and the loss of sight that has led him to purchase a white cane shortly before the interview. We talk about his involvement with the Glaucoma community and how important it is for him and others to share about their condition.

The song selected by Richie is The Distance by Cake.

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Episode 29: Sabina Kineen - Fabry Disease

Sabina's dad was the first in her family to be diagnosed with Fabry Disease, which is hereditary. Sabina and her sisters were all diagnosed with it shortly after, but there was little known about it at the time, in the early 80s. We talk about the many symptoms that are related to Fabry, including ones affecting mental health. Sabina also shares about the guilt that people can feel with inherited diseases, when it is passed on to their children.

The song Sabina selected is We are family by Sister Sledge.

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Episode 27: MarlaJan Wexler - Lupus

MJ has had lupus for many years and it sent her to the emergency rooms many times before she got her diagnosis. In this discussion, we get a feel for how she was impacted by the gaslighting within the healthcare system and the lack of support at home. MJ talks about the symptoms of lupus and how the auto-immune disease affects her body. We also discuss patient advocacy and how meaningful it is for MJ to share with the community.

The song MJ selected is Walk by Foo Fighters.

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Episode 12: Ella Balasa - Cystic Fibrosis

Ella is a patient advocate for people living with Cystic Fibrosis, a genetic condition that affects the lungs and the digestive system. Ella describes how it impacts her and what she needs to do every day to manage her condition. She shares how she feels about potentially needing a lung transplant in the future, and the implications of this procedure. We also talk about how she turned her experience as a patient into her career, as she helps pharmaceutical companies develop protocols and documents that are more easily understood by patients.

The song Ella chose is Forever by Chris Brown.

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Episode 11: Renato Trentin - Haemoglobin Bibba

This is the first time Renato speaks openly about his condition. He was born with an extremely rare disease called Haemoglobin Bibba, which only affects two families in the world as far as he is aware. He talks about going through childhood trying to be like everyone else, and living with a condition that is not well understood. We also discuss the impact on his children and why Renato decided to open up about his condition.

The song Renato selected is Sorrento Moon by Tina Arena.

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Episode 10: Dunstan Nicol-Wilson - Sickle Cell Disease

Sickle cell disease is a genetic condition that can lead to extreme pain. Dunstan shares how it affected him as he grew up, and how it has shaped who he is. Going through therapy helped him accept the disease and made him want to share about it, becoming an advocate for patients with sickle cell. We talk about how working from home makes living with a chronic disease easier to manage, how hospital visits can be traumatic, and the benefits of sharing about your health condition.

The song Dunstan chose is Pepas by Farruko.

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Episode 07: Mackenzie Abramson - Ehlers Danlos Syndrome

Mackenzie knew something was wrong when two different breaks wouldn't heal properly. However, it took multiple opinions before a doctor recognized the symptoms of Ehlers Danlos Syndrome (EDS). She explains how it affects her body, her energy levels and her mental health. She also talks about two other conditions that affect her, postural orthostatic tachycardia syndrome and chronic fatigue syndrome.

The song Mackenzie selected is Fight Song by Rachel Platten.

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Episode 05: Emily Freeman - Psoriatic Arthritis

It took 20 years for Emily to get the right diagnosis of Psoriatic Arthritis, and to get a life-changing treatment. She shares how overwhelming her symptoms can be, preventing her from doing the most simple tasks. She also talks about patient advocacy and how important it is to hear the patient's voice in healthcare.

The song Emily selected is That's me by Tara Maclean.

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Episode 04: Seth Rotberg - Huntington’s Disease

Seth saw how Huntington's Disease (HD) affected his mum and impacted his family. He talks about going through genetic testing aged 20 and the lack of mental health support when being told he also had HD. Whilst he may not experience symptoms yet, he shares his eagerness to take part in clinical trials, and his frustration with the pharmaceutical industry not offering trials for pre-symptomatic HD patients.

The song Seth chose is Feel So Close by Calvin Harris.

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