Foetal Alcohol Spectrum Disorder, FASD with Tristan Casson-Rennie and Jan Griffin

Tristan is the founder of FASD Ireland, a not-for-profit charity that aims to raise awareness and provide support to families in Ireland living with FASD.  And Jan is birth mum to Rossi who was born with FASD.

They are both passionate about raising awareness of the dangers of drinking alcohol during pregnancy and removing the stigma associated with FASD in order that the families can seek the correct support. Jan didn’t realise that she was pregnant for 4 months, during which she consumed alcohol. It is important to point out that Jan doesn’t have an alcohol addiction and that once aware of the pregnancy she stopped, however there was never any guidance from her doctor to tell her do so.

Tristan also has lived experience with his adopted son who has FASD and is campaigning in Ireland for the condition to be recognised as a disability to support the hundreds of babies born every year to parents who unwittingly don’t realise the harm that alcohol can have on a foetuses brain’s neurological pathways.

This conversation is full of tips for parents, families and carers to use.

When planning to have a baby, you and your partner should stop drinking to avoid any chance of the baby having FASD.

For support

FASD Ireland

National FASD UK 

FASD Hub Scotland 

Dr Raja Mukherjee

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email [email protected]

Visit Hidden Disabilities Sunflower 

Autism diagnosis with Bec Street
Bec works for charity Autism Spectrum Australia, as a Sunflower Advocate and is based in Sydney Australia. Since joining the charity 7 months ago Bec has discovered that she has many traits that sit on the autistic spectrum.

In the conversation Bec explains how she felt as a child growing up and her previous employment experiences where adjustments weren’t made for her neurodiversity.

Now that Bec is working in an inclusive environment it has made the world of difference to her working life. Being able to be her authentic self means that she doesn’t feel as though she must mask and can approach her role fully focused on the job in hand. It also means that she is using less of her energy reserves.

We talk about meeting in the middle and all things neurodiverse!

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

Autism Spectrum Australia 

National Autistic Society, UK
 

Hosted by Chantal Boyle and Sandee Facy, Hidden Disabilities Sunflower.

Want to share your story? email [email protected]

Hidden Disabilities Sunflower

Long COVID and autism with Linda Dalton
Linda contracted COVID in 2020 and has been left battling the effects of Long COVID, the healthcare service and the Government in Ireland ever since.

Once a great lover of the outdoors and fitness she now struggles with daily simple tasks such as answering the front door due to chronic fatigue. The brain fog that she experiences means concentrating on TV programmes, remembering what items she’s looking for when shopping are severely hindered.

Linda is campaigning and raising awareness of Long COVID to be recognized by the Government and healthcare service in Ireland. In this conversation she explains the research that she has discovered.

The conversation also covers both her and her daughter’s recent autism diagnosis and how empowered she feels as a result. Linda now understands her behaviours and how she interacts with the world.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

• NHS COVID Recovery 
• Long Covid Ireland Support Group
• Gez Medinger YouTube Channel  

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
Want to share your story? email [email protected]

Meniere’s disease with Lorna Thomas
Lorna Thomas is a musician and has Meniere’s disease which is a long term, progressive condition affecting the balance and hearing parts of the inner ear. Symptoms are acute attacks of vertigo (severe dizziness), fluctuating tinnitus, increasing deafness, and a feeling of pressure in the ear.

During the conversation Lorna explains how her Meniere’s has increased in severity over the past 20 years, including hearing loss and drop attacks. We also discuss what treatment options she has looked at.

She is hopeful that surgery called Endolymphatic Sac Decompression will bring an end to the condition.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

• The Ménière’s Society charity

 Facebook support groups

• Menieres Disease UK
• Menieres Disease Support Group *UK Only* 
• The Meniere's Society

USA 

• Meniere's Disease Support Group 

Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.

Want to share your story? email [email protected]

Kidney Disease with Ayesha Edmondson

Ayesha is a Peer Educator for Kidney Research UK, and she advocates for kidney donors from minority ethnic groups. After experiencing preeclampsia during the pregnancy of her first son Ayesha was diagnosed with Focal Segmental Glomerulosclerosis, FSGS.

She explains what a crucial organ the kidney is for the human body and the functions it performs, as well as symptoms to watch out for. Ayesha is passionate about helping to educate people about kidney disease and is encouraging patients to sign up for the research programme being run by Kidney Research UK.

24 years after her initial diagnosis Ayesha is at Stage 4 of kidney disease and is campaigning for a living donor.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

• Kidney Research UK 
• Find out more about becoming a living Kidney donor 

Check out Ayesha’s Instagram account 

• Start the Conversation 

Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.

Want to share your story? email [email protected]

Endometriosis with Gemma Beswick and Aimee Gill

Gemma is a Volunteer Leader for the charity Endometriosis UK. Because of her lived experience of endometriosis she is passionate about supporting people who are waiting for a diagnosis and joins us to answer our questions.

Aimee is a Sunflower wearer, who is now 18 years old but first started experiencing symptoms when she was 11, at 14 she received her diagnosis. Aimee has had numerous surgical and drug treatments. 

In the conversation they explain the physical effects of endometriosis and the emotional trauma they experienced at not being believed, having to fight for the correct diagnosis and friends falling away.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

• Endometriosis UK 

Check out Aimee’s Instagram account 

• Endo Fighter

Check out the Fife Group Endometriosis Facebook page

• Endometriosis Fife

Invisible Disabilities Index

• Endometriosis

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email [email protected]

Marc Powell, RNIB talks about NaviLens and Kellogg's
If you have a visual impairment how do you know what you are buying, whether it is suitable for your needs, does it contain nuts or other allergens?

These are only some of the questions that are never answered for blind and partially sighted people.

NaviLens technology is changing the landscape of communication and giving people with visual impairments equity to be able to make informed decisions on their purchases.

Marc explains how the technology works with the simple use of an app and a smart phone. We also hear about future aspirations beyond Kellogg's and UK, so that the 2 million people in the UK and the 20 million people in Europe with visual impairments can navigate, shop and cook with confidence.

Find out more

• NaviLens
• RNIB

Hosted by Chantal Boyle, Hidden Disabilities Sunflower

Want to share your story? email [email protected]

Crohns’ disease and Takayasu's with Artie Carden

We caught up with Artie who joined us in a Sunflower Conversation back 2020. Artie has hypermobility syndrome, Crohn’s disease and Takayasu's arteritis. After extended bouts of sickness and diarrhoea Artie sought a medical diagnosis, unfortunately it was this was a misdiagnosis of irritable bowel syndrome which was later changed to a Crohn’s.

Artie’s conditions are autoimmune and result in inflammation across the entire body which can be extremely painful. Artie is on a combination of medications and spends a lot of time researching so that when visiting the doctors is already armed with the information to support the treatment plan.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

• Crohn’s and Colitis 

 Check out Artie's social media pages

• YouTube.com/c/ArtieCarden 
• Twitter.com/ArtieCarden 
• Instagram.com/ArtieCarden 
• Artiecarden.com
• Facebook.com/ArtieCarden 

 
Watch and listen to Artie’s first Sunflower Conversation with us.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email [email protected]

Acquired brain injury with Brooke Simon

TRIGGER WARNING, in this podcast we discuss domestic violence.

Brooke acquired her brain injury at the hands of persistent domestic violence. The trauma she experienced resulted in her losing her sight in one eye, and partially blind in other. She is also partially deaf and uses hearing aids, additionally her mobility has been affected.

Overcoming the extensive physical and psychological injuries she endured, Brooke runs her own business and since her rehabilitation she has had to develop coping strategies to deal with her severe memory loss. 

If you are worried about someone, look out for signs that their behaviour has altered, how they interact with people around them and their appearance. 

If you are experiencing problems discussed in this podcast contact the following organisations for support:

• Australia - Women's Community Shelters 
  Domestic Violence Counselling Line: 1800 737 732
• UK – Refuge
  Helpline: 0808 2000 247
• USA – Domestic Shelters 

Hosted by Paul Shriever, Hidden Disabilities Sunflower.
   
Want to share your story? email [email protected]

Epilepsy and surgery with Hannah Wilson 

Hannah has focal impaired awareness seizures and since we last spoke, 12 months ago, they have got progressively worse. Increasing in frequency and duration. They have also become tonic clonic.

The seizures leave Hannah, bruised, sore and emotionally and physically wiped out. Because of this Hannah has been undergoing to tests which have revealed that she has refractory epilepsy which means that she is drug resistant.  There is an opportunity for Hannah to undergo brain surgery, which while is scary she sees it as a golden opportunity to be seizure free.

Hannah works at Asda, but her passion is her volunteer role with St John’s Ambulance.

“I will fight to the very end to be seizure-free.”

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support
Epilepsy Society

Listen to Hannah’s first Sunflower Conversation with us. 

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.
  
 Want to share your story? email [email protected]