Twitter Chat – Families and Carers - 29/02/2020

On Saturday 29th February 2020, from 3pm we were tapping away on our keyboards and phone hosting another #AddisonsQA Twitter chat. This time we were discussing a topic raised by members at last year's AGM - families and carers

We were delighted to have an expert panel join us, consisting of consultant endocrinologists, specialist endocrine nurses and ADSHG members, ready to answer our #AddisonsQA questions!

With Rare Disease Day trending on Twitter and thousands of posts on the social media platform about all kinds of conditions, our Addison's theme chat was lively, supportive and informative. Thank you to everyone who joined in and shared their views and questions.

Below we’ve included the 6 questions we asked our experts and some of the great advice and tips sent in by medics and people living with Addison’s.

The key pieces of advice we took away were:

Learning about adrenal crisis and what to do in an emergency are great ways to be prepared and have the confidence to use our emergency injection.
Keeping your emergency injection kit and hospital folder up to date.
Having a forum or way to meet others with the same condition helps people with Addison's feel less alone and supported.
Each family is different and with support and information can develop their own approach.

We are very grateful to all who gave their Saturday afternoon to join us for a great tweet chat and for raising awareness of adrenal insufficiency. Thank you!

Follow us on Twitter at @AddisonsUK to hear about our next twitter chat. Questions? Please get in touch on [email protected]

Q1. What do you see as the main challenges for parents and carers in looking after close ones who have Addison’s disease?

A1-a big one must be having the confidence to give a steroid injection in an emergency (& know when to do it!). Training is essential so that you know what to do when it counts #AddisonsQA https://t.co/nEKbO6SNon
— Anna Mitchell (@Anna_L_Mitchell) February 29, 2020

Q2. What steps can parents or carers of patients with Addison’s to ensure the condition is properly managed?

A2. Ensure that medical folder & injection kit is up to date. Recognise when updosing may be required, especially if patient can't identify this & support them when Addison's affects them emotionally which it can do due to low cortisol. #AddisonsQA
— JenCarer (@JenCarer) February 29, 2020

A2. Peer support where you can find it. Managing any rare disease is difficult enough, without the stress of managing it for a loved one. It is really helpful to speak to others in the same position. It helps you understand you’re not alone. #AddisonsQA #RareDiseaseDay2020
— Carl Hall (@esc4p33) February 29, 2020

A2 - be prepared. Know the sick day rules, have a stash of extra tablets available in case up-dosing is needed, have an up to date injection kit and know how to use it #AddisonsQA #RareDiseaseDay #RareReality https://t.co/HA1QGZWiAW
— Anna Mitchell (@Anna_L_Mitchell) February 29, 2020

Q3. Do you have any tips for dealing with the pressures of caring for someone with Addison’s?

A3. Have a support network – be as prepared as you can, gain that knowledge, make sure everyone knows what the condition is & how they can help. When the harder times come you will be more prepared. That won’t entirely relieve those pressures of course #AddisonsQA #RareDiseaseDay
— Carl Hall (@esc4p33) February 29, 2020

#AddisonsQA A3 having a forum like @AddisonsUK so they can talk to others and not feel alone is invaluable. Having open & honest communication with your family/Carers & friends is a must. Share your frustrations with the disease & celebrate the positive
— Libby Holland (@Libbyh74) February 29, 2020

#AddisonsQA A3 having agreements about for example keeping in contact, agreed action in certain circumstances like illness or out with friends https://t.co/5w4EuRJkXl
— ⚫️Clare Fenwick (@csf0961) February 29, 2020

Q4. What does a parent or carer need to bear in mind where the patient has other conditions?

A4 - this is a challenge for doctors as well as patients and their carers. It’s really helpful to have an amazing GP in this case who has oversight of all the medical issues #AddisonsQA #RareDiseaseDay #RareReality https://t.co/4QsNn7b6Ax
— Anna Mitchell (@Anna_L_Mitchell) February 29, 2020

Q4. As a patient, my Mum is my greatest advocate as she fully appreciates & understands the overwhelming impact my other diseases can have on my Addisons & how they affect the stability of my Addison's. #AddisonsQA
— JenCarer (@JenCarer) February 29, 2020

👇🏻exactly this - keep an open mind to the possibility of other problems causing new symptoms #AddisonsQA https://t.co/FmrKrMi5yo
— Anna Mitchell (@Anna_L_Mitchell) February 29, 2020

A4. #AddisonsQA #rarediseaseday2020 Ensure you inform every healthcare provider of your condition. Carry a steroid card/medical alert jewellery https://t.co/YimK5HZ6iI
— Lisa shepherd (@lisashepherdcl1) February 29, 2020

Q5. How can parents and carers of those with Addison’s help the patient move towards self-managing their condition?

A5 - as a parent, I imagine it’s really hard to hand over control-every child is different and so is every family. Each family will find their own way of doing this, at the right time #AddisonsQA #RareDiseaseDay #RareReality https://t.co/mgYhUDV1WB
— Anna Mitchell (@Anna_L_Mitchell) February 29, 2020

A5. At docs appointments, carers should of course support the patients, try and let the person with Addison’s explain how it makes THEM feel, what issues THEY face, what are THEIR worries. Of course help them explain, or add anything they may have missed. #AddisonsQA
— Carl Hall (@esc4p33) February 29, 2020

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