On One Condition
Episodes
Episode 85: Ronna Boles - Scleroderma
29 Apr 2026
Contributed by Lukas
Ronna lives with diffuse systemic scleroderma, a rare and complex autoimmune condition that affects the skin and vital organs like the lungs, heart, a...
Episode 84: Sierra Domb - Visual Snow Syndrome
15 Apr 2026
Contributed by Lukas
When Sierra was diagnosed with Visual Snow Syndrome (VSS), little was known about this condition, and it was extremely difficult for her to get a diag...
Episode 83: Alexa Colella - LGMD2C
01 Apr 2026
Contributed by Lukas
Alexa’s daughter, Charlotte, lives with limb-girdle muscular dystrophy 2C (LGMD2C), a rare genetic disorder leading to childhood-onset progressive m...
Episode 82: Kelly Berger & Avery Roberts - Collagen 6
18 Mar 2026
Contributed by Lukas
Kelly and Avery are two advocates living with Collagen VI-related congenital muscular dystrophy (CMD), an ultra-rare neuromuscular condition that caus...
Episode 81: Carter Hemion - EDS & MCAS
04 Mar 2026
Contributed by Lukas
Carter lives with multiple conditions, and this episode is focused on two of them: Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCA...
Episode 80: Roberta Smith - Alagille Syndrome
11 Feb 2026
Contributed by Lukas
Sylvain speaks with Roberta about living alongside Alagille syndrome through her daughter Chloe’s journey. Roberta shares what it means to parent a ...
Episode 79: Brandon Hudgins - GPA
28 Jan 2026
Contributed by Lukas
Brandon shares a deeply personal and grounded account of living with granulomatosis with polyangiitis (GPA), a rare and potentially life-threatening a...
Episode 78: Gay Grossman - ADCY5
07 Jan 2026
Contributed by Lukas
Sylvain speaks with Gay Grossman about life with ADCY5, a rare genetic movement disorder, and the journey she and her daughter Lily have travelled tog...
Episode 77: Marguerite Hughes - PWS
17 Dec 2025
Contributed by Lukas
Marguerite shares the story of her son Louis and their life with Prader-Willi syndrome (PWS), a complex rare disease. Marguerite speaks with honesty, ...
Episode 76: Angela Papazoglou - IRF2BPL
19 Nov 2025
Contributed by Lukas
This is the story of Yiannis, nicknamed “Mr. Sunshine”, told by his mother Angela. Yiannis is a 5-year-old boy who lives with the ultra-rare IRF2B...
Episode 75: Kayleigh Berkoski - Addison's Disease
05 Nov 2025
Contributed by Lukas
Kayleigh opens up about living with Addison’s disease, a rare condition where the adrenal glands fail to produce enough cortisol. Diagnosed at just ...
Episode 74: Erika Stariha - SATB2-associated Syndrome
22 Oct 2025
Contributed by Lukas
Erika shares her family’s seven-year journey to find a diagnosis for her son, Urban, who was eventually found to have SATB2-associated syndrome. Wit...
Episode 73: Carolyn McNamara - Acromegaly
08 Oct 2025
Contributed by Lukas
Acromegaly is a rare condition caused by a pituitary tumour that leads to excess growth hormone. In this episode, Carolyn shares candidly how her symp...
Episode 72: Giselle Cortes - Cushing Syndrome
24 Sep 2025
Contributed by Lukas
Giselle shares her journey with Cushing syndrome, a rare and often misunderstood condition caused by an overproduction of cortisol. For years, Giselle...
Episode 71: Dariya Butcher - HSP Nephritis
10 Sep 2025
Contributed by Lukas
Dariya’s rare autoimmune kidney condition, HSP Nephritis, has shaped much of her childhood and continues to affect her life today. Diagnosed as a ch...
Episode 70: Kelly Forester - Wet MD
27 Aug 2025
Contributed by Lukas
Kelly speaks with openness and wisdom about living with a condition that is not life-threatening, but deeply life-altering – wet age-related macular...
Episode 69: Daniel Price - TSC
13 Aug 2025
Contributed by Lukas
Daniel lives with a rare genetic condition, Tuberous Sclerosis Complex (TSC), that results in non-cancerous tumors to grow in various organs, includin...
Episode 68: Nate Milam - HLH
30 Jul 2025
Contributed by Lukas
Nate shares his journey with HLH (hemophagocytic lymphohistiocytosis), a rare and life-threatening immune disorder. Misdiagnosed with Crohn’s diseas...
Episode 67: Robert Hay - Haemophilia
16 Jul 2025
Contributed by Lukas
Rob shares his personal journey growing up with severe haemophilia A, a rare bleeding disorder. Diagnosed as a baby due to family history, Rob and his...
Episode 66: Taylor Coffman - aHUS
02 Jul 2025
Contributed by Lukas
Taylor shares her traumatic and transformative journey of being diagnosed with a rare condition – atypical hemolytic uremic syndrome (aHUS) – trig...
Episode 65: Kevin Alexander - PKU
18 Jun 2025
Contributed by Lukas
Kevin opens up about living with PKU, a rare metabolic condition diagnosed at birth that requires lifelong dietary management. As a passionate advocat...
Episode 64: Kristina Morgan & Sana Ansari- Type 1 Diabetes
04 Jun 2025
Contributed by Lukas
A first on the podcast, Sylvain welcomes two guests, Kristina Morgan and Sana Ansari, both living with Type 1 Diabetes. They each have a very differen...
Episode 63: Sarita Edwards - Trisomy 18
21 May 2025
Contributed by Lukas
In this moving episode, I speak with Sarita Edwards, a mother, advocate, and founder of the E.WE Foundation, about her family's journey after her son ...
Episode 62: Barbara Williamson - Sepsis
07 May 2025
Contributed by Lukas
Barbara shares her extraordinary journey through unimaginable challenges, from a discovery of multiple myeloma to a stem cell transplant, induced coma...
Episode 61: MaryAnn Bowman - CRPS & Gastroparesis
23 Apr 2025
Contributed by Lukas
MaryAnn opens up with honesty about her daily life with Complex Regional Pain Syndrome (CRPS) and Gastroparesis. She shares how a fall in the bathroom...
Episode 60: Duncan Passmore - Pearson Syndrome
09 Apr 2025
Contributed by Lukas
This is the deeply moving story of Duncan and his son Torin, who battled Pearson Syndrome, a rare mitochondrial disease. With raw honesty, Duncan shar...
Episode 59: Dwayne Wilson - Pompe Disease
26 Mar 2025
Contributed by Lukas
Dwayne shares his journey of living with Pompe disease, a rare genetic condition also known as acid-maltase disease or glycogen storage disease type I...
Episode 58: Kelly Kearley - PTEN Hamartoma Tumour Syndrome
12 Mar 2025
Contributed by Lukas
Kelly is the mother of Austin, a teenager with PTEN-Hamartoma Tumor Syndrome. She shares her profound journey of navigating life as a parent of a chil...
Episode 57: Jan Steele - Celiac Disease
26 Feb 2025
Contributed by Lukas
Jan was diagnosed with celiac disease at just three years old. She shares her experiences, from childhood challenges to her current work in France, wh...
Episode 56: Jenny Jones - Familial Adenomatous Polyposis
12 Feb 2025
Contributed by Lukas
Jenny recounts a deeply personal story of struggles, courage and self-discovery, as she looks back on her battle with Familial Adenomatous Polyposis (...
Episode 55: Laura Will - Polymicrogyria
29 Jan 2025
Contributed by Lukas
Laura shares her experience as the mother of Alden, a child living with polymicrogyria, a rare brain malformation. With striking honesty, she speaks t...
Episode 54: Joanne Paquette - Ollier's Disease
15 Jan 2025
Contributed by Lukas
Ollier's disease has shaped Joanne's life since infancy. Her story is one of resilience, adaptation, and hope, as she recounts the challenges of under...
Episode 53: Jocelyn Wong - Morquio Syndrome
01 Jan 2025
Contributed by Lukas
Jocelyn shares about living with Morquio Syndrome, a rare skeletal disorder. Her journey started in Hong Kong, where she spent part of her childhood, ...
Episode 52: Chris Velona - Batten Disease CLN8
18 Dec 2024
Contributed by Lukas
Chris shares the profound journey of raising his son, Sebastian, who has Batten disease CLN8. He reflects on the bittersweet experiences of witnessing...
Episode 51: Andrea Sinclair - Polyglandular Autoimmune Syndrome
04 Dec 2024
Contributed by Lukas
Andrea shares her journey with Polyglandular Autoimmune Syndrome (PAS) and its complex challenges. Her story spans a life shaped by resilience and a r...
Episode 50: Jen Cueva - Pulmonary Hypertension
20 Nov 2024
Contributed by Lukas
Jen shares her journey with pulmonary arterial hypertension (PAH), a condition marked by high blood pressure in the lungs, which severely affects her ...
Episode 49: Kerri Mauer - Myasthenia Gravis
06 Nov 2024
Contributed by Lukas
Kerri lives with Myasthenia Gravis (MG), a rare autoimmune condition that has turned her life upside down. Through profound reflections, she shares th...
Episode 48: Daniel DeFabio - Menkes Disease
23 Oct 2024
Contributed by Lukas
In this heartfelt episode, Daniel opens up about his journey with his son, Lucas, who was diagnosed with Menkes disease, a rare genetic disorder. Dani...
Episode 47: Erin Paterson - Huntington's Disease
09 Oct 2024
Contributed by Lukas
Erin opens up about discovering Huntington's disease in her family when she was in her early 30s. She talks about her father and how his outbursts and...
Episode 46: Mike Davies - Eczema
25 Sep 2024
Contributed by Lukas
Mike discusses his lifelong battle with eczema and recent struggles with suspected topical steroid withdrawal (TSW). After being prescribed steroid cr...
Episode 45: Sierra Phillips - Warsaw Breakage Syndrome
11 Sep 2024
Contributed by Lukas
In this emotional episode of the podcast, Sierra speaks about her journey as a mother to Jack, who was diagnosed with the ultra-rare Warsaw Breakage S...
Episode 44: Jamie Nicole - Hashimoto's Disease
28 Aug 2024
Contributed by Lukas
Jamie shares her experience living with Hashimoto's disease, an autoimmune condition affecting the thyroid. She talks about how her symptoms, such as ...
Episode 43: John Muller - Inclusion Body Myositis
14 Aug 2024
Contributed by Lukas
John lives with inclusion body myositis (IBM), a rare muscle-wasting disease. He shares how his symptoms, such as difficulty climbing stairs and playi...
Episode 42: Ray Huml - FSHD
31 Jul 2024
Contributed by Lukas
Both Ray's children were born with FSHD (Facioscapulohumeral Muscular Dystrophy), a common yet lesser-known form of muscular dystrophy. He discusses t...
Episode 41: Megan Starshak - Ulcerative Colitis
17 Jul 2024
Contributed by Lukas
Megan was diagnosed with ulcerative colitis at 18 years old. Although she was diagnosed relatively quickly, what followed was a 6-year battle to find ...
Episode 40: Barak Kassar - ICE Syndrome
03 Jul 2024
Contributed by Lukas
Barak has an extremely rare eye condition called ICE (Iridocorneal Endothelial) Syndrome. Because of this condition, he also developed glaucoma in one...
Episode 39: Lauren McDermott - Stiff Person Syndrome
19 Jun 2024
Contributed by Lukas
Stiff Person Syndrome (SPS) is a rare condition that leads to painful muscle spasms. Lauren believes she had her first symptoms in early 2010s, althou...
Episode 38: Mandolen Mull - Dystonia
05 Jun 2024
Contributed by Lukas
Mandolen Mull suffers from Crohn's Disease and Dystonia. This episode is focused on the latter, which is characterized by muscular spasm and abnormal ...
Episode 37: Dionne Stalling - SBS & PPPD
22 May 2024
Contributed by Lukas
In this 2-part series with Dionne Stalling, we focus on four of the nine conditions that affect her. In part 2, we talk about short bowel syndrom...
Episode 36: Dionne Stalling - PI & CIDP
08 May 2024
Contributed by Lukas
In this 2-part series with Dionne Stalling, we focus on four of the nine conditions that affect her. In part 1, we talk about primary immunodefic...
Episode 35: Rachel Vanni - GA2
24 Apr 2024
Contributed by Lukas
Rachel's daughter, Charlie, was born with the rare condition GA2 (Glutaric Aciduria type 2). It was identified very early on thanks to newborn screeni...
Episode 34: Danielle Drachmann - Ketotic Hypoglycemia
10 Apr 2024
Contributed by Lukas
Danielle's journey with idiopathic pathological ketotic hypoglycemia started with her children's diagnosis, although she had it from a young age herse...
Episode 33: Natalie Hayden - Crohn's Disease
27 Mar 2024
Contributed by Lukas
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 l...
Episode 32: Gary Ho - Gout
13 Mar 2024
Contributed by Lukas
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...
Episode 31: David Hogan - Cowden Syndrome
28 Feb 2024
Contributed by Lukas
David had confirmation of his diagnosis of Cowden Syndrome after his mum passed away with the same condition. David talks about isolation after being ...
Episode 30: Richie Kahn - Wolfram & Charles Bonnet Syndromes
21 Feb 2024
Contributed by Lukas
Richie has a genetic condition called Wolfram Syndrome. The main symptom is a progressive optic atrophy that results in partial loss of sight in Richi...
Episode 29: Sabina Kineen - Fabry Disease
14 Feb 2024
Contributed by Lukas
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 sh...
Episode 28: Sara Brebbia Dirksen - NF1
07 Feb 2024
Contributed by Lukas
Sara had never heard of Neurofibromatosis (NF) before her son, August, was diagnosed with NF1. She has now become very knowledgeable about this condit...
Episode 27: MarlaJan Wexler - Lupus
24 Jan 2024
Contributed by Lukas
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 ...
Episode 26: Cathy Molohan - Parkinson's Disease
10 Jan 2024
Contributed by Lukas
We talk about Clinical Trials a lot in this episode. Cathy is passionate about getting patients involved in the design of trial protocols, as well as ...
Episode 25: Joanna Berthelot - Perimenopause
27 Dec 2023
Contributed by Lukas
My wife, Joanna, has been perimenopausal for several years. In this interview, we talk about the effect it had on her mental health and her body, and ...
Episode 24: Mark Duman - Type 2 Diabetes
13 Dec 2023
Contributed by Lukas
Mark raises critical questions about prevention in this interview, as Type 2 Diabetes can be prevented. He talks about his relationship with food and ...
Episode 23: Bianca Simms - Rett Syndrome
29 Nov 2023
Contributed by Lukas
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 ...
Episode 22: Kristy Taylor - Ataxia
15 Nov 2023
Contributed by Lukas
Ataxia is a group of disorders that affect the muscles, impacting co-ordination, balance and speech. Kristy saw it affect her family before being diag...
Episode 21: Brooke Eby - Amyotrophic Lateral Sclerosis
01 Nov 2023
Contributed by Lukas
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 dia...
Episode 20: Alex Goonesinghe - Cornelia de Lange Syndrome
18 Oct 2023
Contributed by Lukas
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 wor...
Episode 19: Hawken Miller - Duchenne Muscular Dystrophy
04 Oct 2023
Contributed by Lukas
Hawken Miller lives with Duchenne Muscular Dystrophy. He has been a patient advocate for several years, raising awareness alongside the organization h...
Episode 18: David Rose - Occipital Horn Syndrome
20 Sep 2023
Contributed by Lukas
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 b...
Episode 17: Levi Peterson - IIH, Behcet's Disease, Parkinson's Disease
06 Sep 2023
Contributed by Lukas
Levi suffers from Idiopathic Intracranial Hypertension (IIH), Behcet's Disease and Parkinson's Disease. In this interview, she shares about the multip...
Episode 16: Liz Ferguson - Narcolepsy
23 Aug 2023
Contributed by Lukas
Narcolepsy is one of those conditions that people know about, mostly because media have emphasized the extreme cases where people fall asleep in the m...
Episode 15: Emily Hu - ADHD & Depression
09 Aug 2023
Contributed by Lukas
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 wo...
Episode 14: Kara Yarnot - Chronic Migraines
26 Jul 2023
Contributed by Lukas
Kara shares her experience of living with migraines, which can present differently in other people. She explains how her migraines used to be preceded...
Episode 13: Anjo Den Decker - Multiple Sclerosis
12 Jul 2023
Contributed by Lukas
Anjo was working on clinical trials targeting Multiple Sclerosis (MS) when she was diagnosed with the condition. We talked about her diagnosis and why...
Episode 12: Ella Balasa - Cystic Fibrosis
28 Jun 2023
Contributed by Lukas
Ella is a patient advocate for people living with Cystic Fibrosis, a genetic condition that affects the lungs and the digestive system. Ella describes...
Episode 11: Renato Trentin - Haemoglobin Bibba
14 Jun 2023
Contributed by Lukas
This is the first time Renato speaks openly about his condition. He was born with an extremely rare disease called Haemoglobin Bibba, which only affec...
Episode 10: Dunstan Nicol-Wilson - Sickle Cell Disease
31 May 2023
Contributed by Lukas
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 ...
Episode 09: Aaron Blocker - Hypophosphatasia
17 May 2023
Contributed by Lukas
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 ...
Episode 08: Dawn Brockett - Anorexia
03 May 2023
Contributed by Lukas
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...
Episode 07: Mackenzie Abramson - Ehlers Danlos Syndrome
19 Apr 2023
Contributed by Lukas
Mackenzie knew something was wrong when two different breaks wouldn't heal properly. However, it took multiple opinions before a doctor recognized the...
Episode 06: Craig Mooney - Sleep Apnea
05 Apr 2023
Contributed by Lukas
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 lin...
Episode 05: Emily Freeman - Psoriatic Arthritis
22 Mar 2023
Contributed by Lukas
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 sy...
Episode 04: Seth Rotberg - Huntington's Disease
08 Mar 2023
Contributed by Lukas
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 ...
Episode 03 - Alex Wisch - Depression
22 Feb 2023
Contributed by Lukas
Alex’s journey with depression is profound. He talks about extremely tough times, multiple hospitalisations and almost taking his own life. His dete...
Episode 01 - Jay Unwin - Fibromyalgia
25 Jan 2023
Contributed by Lukas
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 a...
Episode 02 - Emily Epstein - BRCA gene mutation
25 Jan 2023
Contributed by Lukas
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 ova...