On One Condition

Mark raises critical questions about prevention in this interview, as Type 2 Diabetes can be prevented. He talks about his relationship with food and the changes he has made to his diet since his diagnosis. We discuss how the healthcare system addresses Type 2, focusing on the symptoms rather than the root cause of those symptoms. Mark shares his recommendations on lifestyle changes that can help prevent Type 2 Diabetes, in his fight to increase prevention of the disease. 

Mark selected two songs: Sympathy for the Devil by the Rolling Stones and We are family by Sister Sledge. 

Bianca is the mother of Lotta, who was born with Rett Syndrome. In this discussion, Bianca shares about her daughter's diagnosis, the lack of support when they received this life-changing information, and how they have adapted to it. We discuss the level of care Lotta requires and the impact on the family life. Bianca also shares the many emotions she has felt over the years, as she went through this journey with her daughter, and how caring for her has changed her. 

The song Bianca chose is Easy Little Song by A.J. Jenkins.

Ataxia is a group of disorders that affect the muscles, impacting co-ordination, balance and speech. Kristy saw it affect her family before being diagnosed herself. It was hard for her to accept the diagnosis and she explains that she withdrew from society for many years, until she finally thought to herself: "no surrender". She talks about what she does now to raise awareness about ataxia and to support others who may go through a similar journey to hers. 

The song Kristy chose is Defiant by VNV Nation.

Brooke was 29 when she had the first symptoms of Amyotrophic Lateral Sclerosis, commonly known as ALS. She talks about how the confirmation of her diagnosis impacted her mentally, and how she finally decided to embrace her condition and become a patient advocate. Brooke's condition does not progress as fast as it typically does, although she is fully aware that it keeps progressing. She has a positive attitude, raising awareness and advocating for people living with ALS. 

The song Brooke chose is Kokomo by The Beach Boys.

Alex is Niko's dad, a 7-year old boy living with Cornelia de Lange Syndrome. In this first interview of a parent on the podcast, we talk about the worry as a parent when the fetus does not develop as expected. Alex shares about Niko's development after birth, the impact of the condition on Niko's body and the level of care they give him to make sure he grows as healthily as possible. We also discuss how Alex and his family communicate with Niko, considering he is non-verbal. 

The song Alex selected is Nirvana's interpretation of Where did you sleep last night.

Hawken Miller lives with Duchenne Muscular Dystrophy. He has been a patient advocate for several years, raising awareness alongside the organization his parents founded, CureDuchenne. In this interview, Hawken talks about the impact of Duchenne on his body, how he still managed to take part in activities as he was growing up, and his hopes for future treatments to reduce the condition's progress. He also explains how CureDuchenne plays a crucial part in discovering new treatments for patients living with Duchenne. 

The song Hawken chose is Clocks by Coldplay.

Occipital Horn Syndrome is an extremely rare disease. David Rose is only aware of a few people living with this condition. It took him many years to be diagnosed accurately, although he had been told early on that his condition was similar to Ehlers Danlos Syndrome (EDS)*. In our discussion, David shares tips about how to look after your mental health and how to stay active when you have a rare disease. We also talk about the importance of communities, which have become more accessible through social media. 

The song David chose is Mr Brightside by The Killers.

*If you want to learn more about Ehlers Danlos Syndrome, listen to episode 7 with Mackenzie Abramson. 

Levi suffers from Idiopathic Intracranial Hypertension (IIH), Behcet's Disease and Parkinson's Disease. In this interview, she shares about the multiple brain surgeries she has had to address her IIH and how it led to developing Parkinson's Disease. We also talked about the complexity of getting a diagnosis for Behcet's Disease, and how having three conditions impacts her ability to get a treatment that is effective. 

The song Levi chose is Celestial by Ed Sheeran.

Narcolepsy is one of those conditions that people know about, mostly because media have emphasized the extreme cases where people fall asleep in the middle of a conversation. In this interview, Liz Ferguson explains that Narcolepsy is a scale that affects people differently. She shares about having cataplectic attacks that led her to her diagnosis. We also talk about how she has adapted to the condition both at work and in her day-to-day life. 

The song Liz chose is Time is running out by Muse

For this interview, Emily was lying down in bed, in a room barely lit. It was important that she found a comfortable position, which would mean she wouldn't feel the need to move. We talk about how ADHD affects her and how she manages her work around it. We also discuss depression and how difficult it was to be diagnosed accurately. Emily shares about not being medicated anymore and why she found it important to not be under medication. 

The song chosen by Emily is Greatest by Sia.