The Sunflower Conversations Hidden Disabilities Sunflower

This podcast was recorded as an Instagram Live.

CONTENT WARNING. The terms suicide and eating disorders are referenced.  Please visit your healthcare provider if you are concerned about any issues relating to this topic. 

Anna Cooper, co-founder of the Menstrual Health Project, and Dr Rebeccah Tomlinson joined us to answer questions from the Sunflower community about Premenstrual Dysphoric Disorder (PMDD).  
In addition to explaining the differences between PMDD and PMS/PMT, they advised on how to seek support and discussed how important it is to track one's cycle.

Questions from the community:
1.       What are the common symptoms of PMDD?
2.       What’s the tipping point where PMS becomes PMDD?
3.       How do people cope with PMDD / what accommodations do people give themselves?
4.       Is there a possibility that the symptoms get less severe or even completely stop by itself?

Disclaimer: Any reference that talks about women includes people assigned female at birth.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support 
The Menstrual Health Project Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
 
If you enjoyed this podcast please leave a rating and review.  Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website


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CONTENT WARNING. We touch upon suicide, eating disorders and self-harm. Our guest will talk about her lived experiences, and signposting to charities for support. Please visit your healthcare provider if you are concerned about any issues relating to this topic. 

This podcast was recorded as an Instagram Live.

For years, Amani battled with anxiety, rage, suicidal thoughts and attempts, which she attributed to severe CPTSD and the other symptoms she experienced were attributed to endometriosis and adenomyosis.
The turning point arrived after being put into chemical menopause while waiting for a hysterectomy. The suicidal thoughts disappeared, Amani instantly felt better, and that is when she discovered that she had been living with PMDD.

Amani talks about the treatments she had, implantable estrogen and the importance of community.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support 


Amani's Instagram The Empty Uterus Club International Association for Premenstrual Disorders IAPMD The Menstrual Health Project Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
 
Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website


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Eve Jensch is 37 and was diagnosed with Parkinson's two years ago. Eve lives in Ireland with her three children and her husband and joins us to talk about her lived experience with Parkinson's. Parkinson's is a progressive neurological condition, which means that it causes problems in the brain as the cells stop working correctly and, over time, stop producing dopamine.

Eve is passionate about dispelling the myth that Parkinson's is an old man's disease. She uses her social media platform to create a community for everyone affected by it to connect, share, and help one another. Her social posts are often humourous despite the daily challenges she faces managing her illness.

Describing her symptoms and the treatment options available, we learn about how vital dopamine is for the body and the various ways in which it is administered.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support


Parkinson's UK charityParkinson's Ireland charityEve's Instagram pd_and_me Hosted by Chantal Boyle and Scott Casson-Rennie, Hidden Disabilities Sunflower.
 
Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website





  

Clare and her daughter, Matilda, join us to discuss Matilda's school experiences. Matilda is nine years old and in year five at primary school; she is autistic and has ADHD.

Friendships can be challenging because Matilda is autistic and doesn't always pick up on social cues. Having ADHD means she needs to be active. Matilda tells us about the adjustments her school has made to support her, including a visual timetable and movement breaks. Mum Clare shares her journey so far, first identifying the areas of daily life Matilda struggles with, then obtaining a diagnosis, and now pursuing a satisfactory EHC plan, which is crucial to ensure that they apply to the best secondary schools to meet Matilda's needs and that when she is there, she has access to adequate funding to support her.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support
National Autistic SocietyHosted by Chantal Boyle, Hidden Disabilities Sunflower.
 
Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Our guests are Karina Smith and Michelle Culbert, from South Florida, who both have Optic Nerve Glioma, a rare eye condition affecting sight that typically affects young children. It is a slow-growing brain tumour in or around the optic nerve, which connects the eye to the brain. As the tumour progresses, it presses on the optic nerve.

Karina and Michelle believe they are the only two adults in Florida with this rare eye condition. Sadly, there is very little knowledge, advice, and guidance on how to treat optic nerve glioma in adults.

They both explain how what the sudden onset of sight loss was like for each of them, physically and emotionally and the steps that they had to take to weather the mental health impact it took. We also hear about the treatment they have both had, which includes proton beam radiation therapy.

Together, they are reaching out globally to other people with rare eye conditions to create a support community where people can share their experiences.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support
ONG.Awareness InstagramContact: ong.aware@gmail.comHosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.
 
Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

CONTENT WARNING. The topic is eating disorders, and throughout the podcast, our guest will talk about their lived experiences, as well as signposting to charities for support. Please visit your healthcare provider if you are concerned about any issues relating to this topic.

Undiagnosed autism and ADHD have played a part in Adam developing an eating disorder at secondary school. He battled through excruciating pain until the point of becoming hospitalised and, as a result, being left irreparably physically damaged.

During the conversation, Adam shares his journey of recovery. He talks us through the different types of eating disorders and how they present. We also cover the dangers of diet culture, societal pressures, stigma and shame.

Adam has a stoma as a result of severe intestinal issues and a prolapsed bowel, as well as musculoskeletal syndrome, all of which leave him with chronic pain and fatigue.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support
BEAT UKF.E.A.S.TFirst Steps EDHosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.
 
Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website