When Liz Curtis's daughter Lily was seven weeks old, something was not right.

She struggled to gain weight and had seizures where she stopped breathing. Liz and her husband were told Lily had a mitochondrial disease, that there was no cure and no treatment, and that she was unlikely to survive. Lily lived for another six months at home with her family.

Liz went looking for information and other families, and found almost nothing written for parents.

In October 2007, six months after Lily died, she set up the Lily Foundation. Nearly 19 years later, the charity has raised millions of pounds for research and supported more than 1,500 families, and it has helped drive advances in genetic diagnosis.

In this conversation, Liz talks about what it is like to live with a child with a life-limiting condition, how mitochondrial disease is passed on, the difficult question of whether to test, the community she has built, and the charity's plans for a UK Mitochondrial Disease Research Institute.

Chapters

00:00 Introduction

02:36 Lily's illness and diagnosis

05:01 Taking Lily home

06:46 Setting up the charity

09:28 Funding genetic testing, and how the NHS took it on

10:35 The London Marathon and the first families

13:15 Living with the waiting

14:40 Making sure everyone met Lily

16:20 What is mitochondrial disease?

18:01 How it is inherited

21:51 Should you test?

25:17 The community: online groups, weekends and coffee mornings

27:51 Why the charity paused its research call

29:28 The Mitochondrial Disease Research Institute

34:36 Building the foundations

35:39 How to get involved

36:53 The Lily Family

About Liz Curtis

Liz Curtis MBE, is the founder and CEO of the Lily Foundation, a UK charity dedicated to fighting mitochondrial disease. She founded it in 2007 after losing her daughter Lily, with the aim of funding research, improving understanding of the condition, and supporting affected families.

If you or your family have been affected by mitochondrial disease, you are not alone. Find out more about the Lily Foundation here: [add link].

This episode includes a discussion of the loss of a child.

This episode is for general information and is not a substitute for medical advice. If you have concerns about your health or your child's health, please speak to your GP or specialist team.

My Health Focus is not a medical service. The information provided is for general informational purposes only and does not constitute medical advice, diagnosis, or treatment.

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Show Notes:

Marianne Nicholson, MBE, Director of the Shingles Support Society, joins Catriona to discuss shingles, the reactivation of chickenpox virus, and the lasting nerve pain it can cause.

Key takeaways:

1. Shingles is a reactivation of the chickenpox virus, appearing in a small region on one side of the body, most commonly the ribs or face. Early nerve sensations are often mistaken for a pulled muscle or insect bite.

2. The 72-hour window to start antiviral treatment is critical. The sooner treatment begins, the less severe the outbreak and the lower the risk of lasting pain.

3. The NHS shingles vaccine (Shingrix, two doses) is available to people who turned 65 after 1st September 2023 and anyone in their 70s. After 80, it is no longer available on the NHS. People over 50 can pay privately.

4. Post-herpetic neuralgia is ongoing nerve pain after shingles has healed, sometimes lasting for life. Research has measured the pain as worse than childbirth in some cases.

5. Because shingles pain is 'ghost pain' created by disturbed nerves rather than actual tissue damage, psychological techniques like hypnotherapy and physical strategies like firm pressure bandages can help manage it safely.

Marianne Nicholson, MBE, has been Director of the Shingles Support Society for almost 30 years, helping people understand shingles, its prevention, and its aftermath.

For more information, visit shinglesupport.org.uk. If this episode could help someone you know, please share it.

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1. [02:15] Marianne explains that chickenpox sets up home in a corner of your body and can reactivate as shingles when your immune system is less efficient or has lowered its guard over time.

2. [04:30] Marianne describes the early nerve sensations of shingles: 'people think that they pull the muscle or they've been bitten by an insect or they've got perhaps an allergy to a plant in the garden because of that nettle sting feeling.'

3. [05:10] Marianne states that doctors are told that after 72 hours it's probably not worth giving the antiviral drugs, emphasising 'the sooner the better for shingles.'

4. [10:45] Marianne explains that people who have nursed series of children through chickenpox are less likely to have shingles than those who last met chickenpox virus at age 10.

5. [13:20] Marianne clarifies the NHS vaccine eligibility: people who turned 65 after 1st September 2023, anyone in their 70s, but not after 80. She also explains that people over 50 can buy it privately.

6. [15:50] Marianne describes her own decision to pay privately for Shingrix after receiving Zostavax years earlier, because Zostavax is not expected to last more than about 10 years.

7. [19:45] Marianne references research showing shingles pain measured as worse than childbirth, then adds: 'imagine being in the throes of childbirth every day for the rest of your life with never a baby to show for it.'

8. [21:30] Marianne describes her own shingles pain as 'somebody had got one of those wire brushes that you use to brush rust off cars and was sort of pushing it into my back,' and that 10 years later she still has 10% of that pain.

9. [24:10] Marianne explains that shingles pain is 'ghost pain' because 'there is nothing wrong with the area that hurts,' unlike a broken leg or burnt skin, so psychological ways of ignoring it are perfectly safe.

10. [27:00] Marianne shares the corset T-shirt tip: a man bought a heavily elasticated T-shirt, had a seamstress add hooks and eyes down the front, and the firm pressure stopped the feeling of clothing scraping his skin like sandpaper or barbed wire.

My Health Focus is not a medical service. The information provided is for general informational purposes only and does not constitute medical advice, diagnosis, or treatment.

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Mrs. Connie Lee Montgomery is a global patient advocate, retired occupational therapist, and founder of The Rare Cares Collective. She lives with Factor Seven Deficiency, Pemphigus Vulgaris, and three chronic conditions.

Key takeaways:

1. Listen deeply to what patients say and don't say, including their body language and pauses around sensitive topics shaped by cultural, religious, or stigma-related factors.

2. Humanise people by thinking of them as your own family member, which helps you listen more compassionately to whatever is being shared.

3. Have a referral network ready before you ask about social needs, so you can move from gathering data to taking action when someone shares a nutritional, transportation, or access need.

4. Build long-term ecosystems of care that consider the whole person, their zip code, access to food and transport, and the supportive relationships around them.

5. Be present in communities before extracting information. Attend health fairs, faith gatherings, youth activities, and Little League games to build trust relationships over time.

Connie waited 30 years for a bleeding disorder diagnosis due to implicit bias, lack of clinician knowledge, and failure to consider her whole being. She founded The Rare Cares Collective to connect rare and ultra-rare communities globally, enabling communication, connection, and collaboration.

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1. [00:01:43] Ask the person how they want to be referred to and what they want to talk about, because getting their input is key to how you move forward.

2. [00:02:31] Patient engagement is simply people sharing their insights about their own lived experience with whatever condition it is they have.

3. [00:07:13] Listen to what people are not sharing, their nonverbal cues, their body language, and watch for pauses when friction factors or pain points come up.

4. [00:08:20] Humanise people by thinking about what if this was my mother, my father, my loved one, because that helps you listen more compassionately.

5. [00:09:19] Have a referrals list in place beforehand so you can actually refer them to get the services they need. That moves beyond gathering data to action.

6. [00:11:38] The fact that you validated that I've spoken and you've heard what I said goes a long way to building something I call trust.

7. [00:15:17] You can no longer come to communities and extract their information, extract and utilise their bodies for research without really building relationships and learning from the leaders and people in those communities.

8. [00:17:13] Whole person care is considering the entire ecosystem of care around that person, that zip code that person lives in, access to nutritious food, public transportation, supportive family.

9. [00:18:05] It took me 30 years to get a diagnosis. The entire being of who I am was not considered, whether it was overt discrimination and implicit bias or lack of knowledge on the part of healthcare practitioners.

10. [00:21:27] The Rare Cares Collective is going to be one of the first organisations that will bring people together locally, nationally, and globally who may be in that same diagnosis state.

My Health Focus is not a medical service. The information provided is for general informational purposes only and does not constitute medical advice, diagnosis, or treatment.

JOIN THE MY HEALTH FOCUS COMMUNITY AND SIGN UP TO OUR NEWSLETTER

Hosted on Acast. See acast.com/privacy for more information.