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.

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Samantha Barber, CEO of Gene People, and Emily Clark, a registered genetic counsellor, discuss the work of their national charity supporting people living with genetic and rare conditions.

5 Key Takeaways:

1. Over 3.5 million people in the UK live with a rare condition, 80% of which are genetic, spanning the entire lifespan from babies to older adults.

2. Gene People's helpline offers flexible support at all stages, from pre-diagnosis through to family planning, with some conversations lasting months or even years.

3. The charity supports people with ultra-rare conditions where no condition-specific group exists, as well as those with slightly less rare diagnoses who need additional guidance.

4. Their partnership network connects rare disease organisations, from Facebook peer support groups to registered charities, offering free membership, symposiums, and discounts on essential services.

5. Many rare condition charities are family-run, born from families who don't want others to face the same struggles, and Gene People helps them navigate compliance, governance, and fundraising.

Samantha Barber is CEO of Gene People, bringing nearly 30 years of voluntary sector experience. Emily Clark is a registered genetic counsellor who runs the charity's genetic conditions helpline.

If you or someone you know is affected by a genetic condition, visit genepeople.org.uk or call their helpline for support.

1. [[00:05:52.980]] Emily explains that some conditions are so rare there might only be a handful of people diagnosed with that condition in the world, so they may not have a condition-specific support group to turn to.

2. [[00:06:39.679]] Emily points out that although the condition may be different, many questions families have are similar across conditions, allowing her to work with families on inheritance, family planning, and genetic testing regardless of diagnosis.

3. [[00:08:04.010]] Emily describes the diagnostic odyssey, saying it can take a really long time to get a diagnosis and to get the right diagnosis, with some families experiencing symptoms that remain undiagnosed over quite a long period of time.

4. [[00:10:34.640]] Emily explains that a few people maintain ongoing contact intermittently over a much more extended period of time, like a couple of years, such as those in the 100,000 Genomes Project.

5. [[00:14:08.000]] Sam says that not being focused on one condition gives us a range of perspectives and experiences that we hear about, which helps inform the other parts of our work.

6. [[00:17:54.340]] Sam explains that whether you are a 10,000 pound charity or a 10 million pound charity, the same level of compliance and governance are needed, but it just gets harder to fund for smaller organisations.

7. [[00:20:30.660]] Sam recounts families saying, 'I couldn't let anyone else go through what we went through,' explaining the altruism that drives family-run rare condition organisations.

8. [[00:22:49.780]] Emily says we know it is isolating for so many families out there with rare conditions and it's hard to pick up the phone or send off that email sometimes initially because you don't know really where it's going.

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

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