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Patients and caregivers are “Experts by Experience”

Posted by @colleenyoung, Fri, Feb 2 10:36am

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

REPLY

@colleenyoung

Great article and wonderful idea to have Experts by Experience!

Teresa

Anyone can explain medicare
Benefits for Rehabilitation and pAlliative care. Positive points of both.

I’d like to hear what people have to say about them too.

@minnesota

Anyone can explain medicare
Benefits for Rehabilitation and pAlliative care. Positive points of both.

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Hi @minnesota
Very good question. I would recommend that you start a new discussion in the Just Want to Talk group with a title describing your question. That will attract more responses from fellow members.

Here’s how to start a new discussion:
1. Go to the Just Want to Talk group homepage here: https://connect.mayoclinic.org/group/other/
2. Click the START A DISCUSSION button.
3. Enter a title. Something like “Medicare Benefits for Rehab and Palliative Care”
4. Write your message.
5. Click CREATE DISCUSSION

I think this will be a very useful discussion for many members of the community. I thank you for starting it.

Love this idea. Stories are important as is kindness. Can I share a my latest talk summary by a doctor asking for kindness?

@alpaca

Love this idea. Stories are important as is kindness. Can I share a my latest talk summary by a doctor asking for kindness?

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Yes, please share.

Thank you for your continued service to this community!

http://headandneck.org.nz/news/grace-under-pressure-february-meeting
This is my summary of a talk given by a Fellow at our local children’s hospital. He worked in Canada and Australia with adult cancer patients in the ENT field. So the relevance here is that he maintains that patients teach him. I’m also very interested in patient stories which help the writers and the readers in equal measure.

@alpaca

http://headandneck.org.nz/news/grace-under-pressure-february-meeting
This is my summary of a talk given by a Fellow at our local children’s hospital. He worked in Canada and Australia with adult cancer patients in the ENT field. So the relevance here is that he maintains that patients teach him. I’m also very interested in patient stories which help the writers and the readers in equal measure.

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Thank you for sharing this story about Dr. Eric Levi and his attitude towards life-long learning from patients.

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

@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.

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

@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/

@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.

@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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What is Medi-honey?

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