“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 https://share-eu1.hsforms.com/1C75FoIQTR3OJIRsZoL8kRwg1xvl. Alternatively, join the conversation online by becoming a member of our private Facebook group, Rare Disease Network https://www.facebook.com/groups/rarediseasenetwork, 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 Useful links: You can find out more about the Acromegaly Community here. https://www.facebook.com/acromegaly You can find out more about the Living With Addisons Disease support group here. https://www.facebook.com/groups/LivingWithAddisonsDisease You can find the Addisons Awareness Group on Facebook here. https://www.facebook.com/groups/175948922471395 You can find out more about the Medisafe app, here. https://medisafeapp.com/m/ You can find out more about the Guava app, here. https://guavahealth.com/ Audio: Spirit Blossom by Roman Belov