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Patients and caregivers are “Experts by Experience”

Posted by Colleen Young, Connect Director @colleenyoung, Feb 2, 2018

Dear members,
Today we're excited to announce that Mayo Clinic and Inspire have launched “Experts by Experience” – monthly articles written by patients and caregivers from around the world.

The kickoff article is Kindness at the Margins for Caregivers by caregiver Renata Louwers.

Everyone has a story to tell. As you know firsthand, sharing experiences helps build hope and connections. “We have long believed that patient and caregiver stories have considerable power to not just improve their own health care experience, but to improve health care overall,” says Farris Timimi, M.D., a Mayo Clinic cardiologist and medical director for the Mayo Clinic Social Media Network, a collaborative learning community and resources for advancing the use of social media in health.

Experts by Experience articles will appear monthly in communities here on Mayo Clinic Connect, Inspire.com, and for professionals on the Mayo Clinic Social Media Network. Read more about Experts by Experience in today's press release.

Please feel free to share the articles with your online and offline networks. If you have feedback on the series, please contact me using this form.

Staying connected,
Colleen
Community Director, Mayo Clinic Connect

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 9, 2018
In reply to @superwife "Colleen - I have an ankle wound no on has been able to heal. There is..." + (show)
@superwife

Colleen - I have an ankle wound no on has been able to heal. There is extreme pain, but it is not part of my neuropathy (well treated by Gabapentin). The medical profession knows of nothing further (save possibly plastic surgery). Is there a group I should be in? Superwife

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That's a good question, @superwife. I might suggest the Skin Health group https://connect.mayoclinic.org/group/skin-conditions/

@mlemieux and other members have written quite a bit about wound care related to his conditions. See these discussions:
- Livedoid vasculopathy https://connect.mayoclinic.org/discussion/livedoid-vasculopathy/
- Treatment options for Lividoid Vasculopathy (LV) https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/

Note, I'm not suggesting you are dealing with LV.

REPLY
lioness | @lioness | Feb 9, 2018

Hi Colleen I decided to write my story on Coronary Artery Disease here ,not sure this is the right format Lionessthekind

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 10, 2018
In reply to @lioness "Hi Colleen I decided to write my story on Coronary Artery Disease here ,not sure this..." + (show)
@lioness

Hi Colleen I decided to write my story on Coronary Artery Disease here ,not sure this is the right format Lionessthekind

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@lioness, It would great if you could post your story about Coronary Artery Disease in the Heart & Blood group here: https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/

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highlanderco | @highlanderco | Feb 10, 2018
In reply to @superwife "Colleen - I have an ankle wound no on has been able to heal. There is..." + (show)
@superwife

Colleen - I have an ankle wound no on has been able to heal. There is extreme pain, but it is not part of my neuropathy (well treated by Gabapentin). The medical profession knows of nothing further (save possibly plastic surgery). Is there a group I should be in? Superwife

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Has your health care team tried Medi-Honey? Worked great for me when other treatments failed.

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lioness | @lioness | Feb 10, 2018
In reply to @superwife "Colleen - I have an ankle wound no on has been able to heal. There is..." + (show)
@superwife

Colleen - I have an ankle wound no on has been able to heal. There is extreme pain, but it is not part of my neuropathy (well treated by Gabapentin). The medical profession knows of nothing further (save possibly plastic surgery). Is there a group I should be in? Superwife

Jump to this post

What is Medi-honey?

REPLY
lioness | @lioness | Feb 10, 2018
In reply to @lioness "Hi Colleen I decided to write my story on Coronary Artery Disease here ,not sure this..." + (show)
@lioness

Hi Colleen I decided to write my story on Coronary Artery Disease here ,not sure this is the right format Lionessthekind

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Thanks Colleen

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Merry, Alumni Mentor | @merpreb | Feb 15, 2018

Hello- I would love to submit a story about guilt, shame and opinions when "you" have cancer.

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Merry, Alumni Mentor | @merpreb | Feb 15, 2018

I have a post on my blog that deals with this exactly

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Merry, Alumni Mentor | @merpreb | Feb 17, 2018
In reply to @alpaca "Sounds interesting @merpreb" + (show)
@alpaca

Sounds interesting @merpreb

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Do you want me to send it anywhere?

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