Many MEN1 patients don’t realise how much high calcium is draining their energy—until after surgery.

In this episode, Stella shares her journey with MEN1, from her family history in Greece to navigating healthcare in the UK. She opens up about her recent parathyroid surgery, the unexpected boost in energy, and how her work in cell therapy research has shaped her perspective on cancer and MEN1.  

We also discuss the challenges of getting diagnosed, the importance of trusted medical sources, and why life expectancy statistics can be misleading.  

If you're looking for insight, reassurance, and a refreshing take on managing MEN1, this one's for you.  

ABOUT OUR GUEST

Stella LOVES cats, yoga, cells & controversial, spicy chats! Reach out to Stella here.

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

When do you take action with MEN1, and when do you wait?

In this episode, we dive into the tough decisions MEN1 patients face—balancing symptoms, surgery, and long-term health. Justin shares his personal journey, the challenges of navigating uncertainty, and the mindset shifts that changed everything.

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

"On my birthday, I ended up in the hospital, barely conscious. Doctors assumed I was drunk—but the truth was far more serious."

In this episode, MEN1 Patient, Kinga, shares:

🔹 The unexpected symptoms that led to her diagnosis
🔹 The biggest mistakes she made at the start
🔹 How she found support & learned to advocate for herself
🔹 What she wishes she knew back in 2019

If you or a loved one are navigating MEN1—or any rare condition—this episode is for you. 💛

📌 Join My MEN1 Community: https://lizziedunn.ck.page/jointhecommunity

⏳ Timestamps:
00:00 Intro
00:30 The night everything changed
04:15 Getting diagnosed with MEN1 Mosaicism
07:40 Learning to advocate for herself
10:55 Managing MEN1 across different countries
14:20 What she wishes she knew sooner
16:00 Advice for anyone facing a rare disease

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

How are you meant to keep yourself informed about MEN1 when even those whose job it is to have the knowledge still know so little?//

Today's guest, a MEN1 Patient & Nurse Practitioner, shares:

1) how an over-the-top reaction from her doctor-colleagues led her to believe she might only have a couple of years left to live with MEN1//

2) how practising yoga helped stop her panic episodes in the middle of the night//

3) how a combination of top medical care and self-led research means she stays positive & well in spite of everything//

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

Have you ever wondered whether a genetic disorder like MEN1 could be affected by lifestyle health such as diet?//

Today's guest, an internationally-renowned Functional Medicine Doctor shares:

1) why MEN1 patients need a strong immune system and diet is one of the key factors

2) why traditional medical approaches continue to ignore lifestyle factors in treating disease & this lets MEN1 patients down

3) how MEN1 patients could change three simple things about their diet or relationship with eating to improve their health

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

You know the way people look at you when they feel sorry for you?//

Today's guest, a MEN2a Patient (including Stage 4 Cancer) & Founder of an International Cancer Patient Movement, shares:

1) how a sweaty episode on the tube to work one morning turned into the discovery of a 8cm tumour//

2) how he had to sideline his professional basketball career to take care of his health//

3) how he is on a mission to change the 'taboo' stigma around cancer & cancer-related diagnoses//

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

Does being a MEN1 Patient make you feel like the victim of genetic misfortune?//

My patient guest shares:

1) how lack of relevant information, poor medical care & the internet created chaos in her family's and her diagnosis process//

2) how in spite of all of this, she is determined to take responsibility for her health(care) wherever she can//

3) how she wants to set the best example for her children on how to stay positive and look after themselves//

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

Have you ever wondered why you go for bone scans and get achey joints as a MEN1 patient?//

This Pain Rehab Coach & Neurokinetic Therapist explains://

1) Why MEN1 affects your bones & joints//

2) How surgery affects MEN1 patients long-term//

3) What you can do to be free from physical pain & discomfort in MEN1//

ABOUT OUR GUEST//

Gurinder joined the fitness industry in 2012 and qualified as a Personal Trainer in 2013. Since 2014, he has been coaching committed professionals to overcome chronic or recurring back pain once and for all so that they can move freely without fear, regain total confidence in their bodies, and go back to living the life they love.//

Gurinder would love to help you further if he can. Reach out to him @gurindersandhucoaching on Instagram or Facebook

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

Have you found yourself being dismissed, overlooked or even misdiagnosed because MEN1 is such a rare disease?//

Jo Grey, CEO of AMEND Charity & MEN2a Patient shares://

1) how doctors missed her MEN2a symptoms & a psychiatrist implied she was hallucinating//
2) why she 'accidentally' became AMEND's CEO when a newsletter advert helped find her people//
3) what she does with AMEND to make noise, so that patient-needs continue to get met//

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

Have you found your MEN1 goes quiet and then all of a sudden starts causing problems?//

Lead Clinician for Endocrinology, Professor Karim Meeran, shares: 

1) what it is that 'triggers' the MEN1 disease to flare up in a patient//

2) whether MEN1 patients have an increased risk of developing cancer//

3) why stress could affect MEN1 (but not your boss shouting at you!)//

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.