“It happened all at once” featuring Libby and Jonathan

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Rare Together

LDA Research

14 episodes

2 weeks ago

Welcome to Rare Together, the podcast series produced by LDA Research. Join us as we bring together individuals living with rare diseases to share their personal stories and experiences in a series of one-to-one conversations. Rare Together offers individuals, including those living with rare diseases, caregivers, family members, and healthcare professionals, the opportunity to hear from others affected and gain deeper insights into the unique complexities associated with different rare diseases. Read more and apply to be a future guest: https://ldaresearch.com/rare-together

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“It happened all at once” featuring Libby and Jonathan

Rare Together

45 minutes 17 seconds

2 years ago

“It happened all at once” featuring Libby and Jonathan

In this episode of Rare Together, we’re joined by two people affected by rare hormonal disorders; Libby, from Belfast in Northern Ireland, who has been living with Addisons Disease for the last decade and Jonathan from Long Island in the United States, who has been diagnosed with Acromegaly.

Join us in this emotional chat as we hear how Libby and Jonathan’s lives have been changed dramatically as a result of the symptoms of their rare conditions. We delve into what it’s like to live with real fatigue and we understand more about brain fog; what is it, and how does it impact day to day life? We also chat about home and family life, and the huge changes life with a rare condition can lead to.

Our host today as always is the wonderful Andrew Grant. Andrew is an experienced medical research consultant with LDA Research, an international medical market research organisation working in the pharmaceutical industry and medical device sector.

If you would like to share your story and help raise awareness of a rare condition you’re affected by, please apply to be part of the podcast here. Alternatively, join the conversation online by becoming a member of our private Facebook group, Rare Disease Network, where we’ve created a community of people from across the globe affected by rare diseases.

Introducing Libby - 01:07
Introducing Jonathan - 02:38
The importance of support groups - 04:23
The (long) journey to diagnosis - 07:03
What is fatigue? - 10:19
Brain Fog - 15:42
The effets of rare conditions on your home and family life - 27:35
Research into rare disease - 32:26
Tips, tricks and hacks for living with a rare condition - 37:16
A positive that’s come from our rare conditions is… - 41:42

You can find out more about the Acromegaly Community here.

You can find out more about the Living With Addisons Disease support group here.

You can find the Addisons Awareness Group on Facebook here.

You can find out more about the Medisafe app, here.

You can find out more about the Guava app, here.

You can find the Acromegalay Mens Only Group here.

You can find the Addisons Warriors on Facebook here.

Audio: Spirit Blossom by Roman Belov