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 immunodefiency and chronic inflammatory demyelating polyneuropathy. In Dionne's case, both conditions are linked and she shares how. Dionne is a single mum that has had to juggle with a lot of doctor's appointments whilst raising her two children. She opens up about the toll living with rare diseases has had on her family. We also talk about patient advocacy and the organization she created, Rare and Black.

The first song Dionne selected is Heaven Knows by Lalah Hathaway.

Rachel's daughter, Charlie, was born with the rare condition GA2 (Glutaric Aciduria type 2). It was identified very early on thanks to newborn screening, but unfortunately it has a very poor prognosis when diagnosed so early. We talk about how GA2 affected Charlie, the importance of communities for parents dealing with such conditions, and the benefits of grief counseling. Rachel also shares the beautiful life lesson Charlie has taught her.

The song Rachel selected is I reach for the sky by Social Distortion.

Danielle's journey with idiopathic pathological ketotic hypoglycemia started with her children's diagnosis, although she had it from a young age herself, but was mis-diagnosed. In this interview, we talk about how this rare disease affects her body. She describes the complexity of raising children with a strict diet, where food intake becomes source of anxiety for parents and child. We also discuss the impact patient advocates have in our world, and her contribution to an initiative by the European Parliament.

The song that Danielle chose is Nothing Else Matters by Metallica.

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.

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.

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.

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.

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.

Sara had never heard of Neurofibromatosis (NF) before her son, August, was diagnosed with NF1. She has now become very knowledgeable about this condition, and she raises her voice to increase awareness of this rare disease. Sara shares how NF1 has rocked their world, between hospital appointments, hormonal treatments and trying to turn a rare disease into something to be proud of for August. With such a progressive disease, their journey is not over, but I am hopeful that patient advocates like Sara are paving the path to a treatment.

The song that Sara chose is Never give up by Sia.

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.

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 advancing research in Parkinson's Disease. She shares her frustration with the lack of advancement in stopping the disease progression, considering Levodopa is still the treatment of choice more than 60 years after its first use in Parkinson's patients. We discuss the difficulty of defining the right end point for trials targeting PD, as patients can have very different symptoms. Cathy also talks about the deep brain stimulation procedure she went through to help control her tremor.

The song Cathy selected is The best of you by Foo Fighters.

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 how she knew it was perimenopause. She shares her decision process when she was offered to take HRT (hormone replacement therapy), despite the stigma and risks that are related to it. We also talk about lifestyle changes that can help with perimenopause. Joanna emphasizes the need to raise awareness about perimenopause and the importance of talking about it, at home or more broadly.

The song Joanna chose is I wanna dance with somebody by Whitney Houston.

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.