On One Condition

Kara shares her experience of living with migraines, which can present differently in other people. She explains how her migraines used to be preceded by an aura in the first years. We talked about what she can do to reduce the risk of having a migraine, and the medication she can take to address the symptoms. We also discussed how Kara maintains a working life even when migraines can keep her bed...

Anjo was working on clinical trials targeting Multiple Sclerosis (MS) when she was diagnosed with the condition. We talked about her diagnosis and why she took the news relatively well, being close to the science. She also shares how she remains active despite the illness, showing how important it is to know your body when you have a condition such as MS. The song Anjo chose is Wish You Were Here...

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 experien...

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...

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...

Aaron had 21 surgeries related to his condition, Hypophosphatasia. He had to do his own research to find a potential diagnosis for himself, before it being confirmed through genetic testing. Aaron shares how the condition affected him as he was growing up. He also talks about what it is like to have a rare disease and how lengthy the diagnosis can be.  The song Aaron chose is The only excepti...

Forget what you believe you know about anorexia and listen to Dawn. She opens a window into the psychology of anorexia. She shares the social pressure she was under as a child, and how it affected her growing up. She explains why she felt like she needed to take as little space as possible. We also discussed what her path to recovery was and what she does to make sure she stays in a psychologicall...

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 syndrom...

Craig was aware that he might have sleep apnea, but he didn't consider it as a health issue. It's only when he was made aware of a tragic incident linked to sleep apnea that he booked an urgent appointment with his doctors. He talks about what it is like to sleep with a machine and the importance of getting checked if you think you may have sleep apnea. The song Craig chose is Stuck in a moment yo...

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.

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...

Alex’s journey with depression is profound. He talks about extremely tough times, multiple hospitalisations and almost taking his own life. His determination is exceptional though, an example of how to overcome your own challenges. The song Alex selected is Dance Monkey by Tones & I.

Emily discovered that she has the BRCA gene mutation by chance. It has led her to have multiple surgeries to reduce her risks of having breast and ovarian cancer. Through her journey, Emiliy has realized that the healthcare system does not provide the support patients need. She now advocates for more support for patients within the healthcare industry. I apologize for mispronouncing BRCA. By liste...

Jay was diagnosed with fibromyalgia in 2020, and he believes he has had this condition for 20 years before being diagnosed. In this episode, we talk about Deftones, how firbomyalgia affects Jay, and how he balances doing what he enjoys in life with the risk of having a flare-up.  The music selected by Jay is the album White Poney by Deftones.