Sharing your Story on Social Media - Kidney Transplant

Kidney Transplant

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Sharing your Story on Social Media

KelliC_NKF profile image
6 Replies

Has anyone used social media to try to find a living donor? If so, do you have any suggestions or tips for others?

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KelliC_NKF profile image
KelliC_NKF
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6 Replies
Tammit profile image
Tammit

Write from the heart and include stats and data about the importance of donors. I used FB. I have a family member being tested now (though it came about from conversation vs. FB.) It felt odd being so out there but I looked at it as a way to educate (and I did it around the time the Affordable Care Act here was being gutted and pre-exisiting conditions were being discussed) so that spurred me even further.

Dixidude39 profile image
Dixidude39

In addition to Tammit, I have read at least a half-dozen accounts in the last several months (on this site). What a wonderful purpose for using social media. It is in effect a compassionate marketing venture. Best wishes!!

Bobbiereed profile image
BobbiereedNKF Ambassador

You know social media played a very important role in finding my son his non-related living kidney donor. I helped him by asking every contact we ever had through school, business, church, and socially. The key to his success was each time an organization, school, newspaper or anyone printed or did anything to help us get the word out, I made sure to re-post on Facebook their contribution to helping. I asked again each time that the re-post I was making be shared. It was through this repetitive thanking and re-posting that his donor came to us. His comment was that he saw the repeated posts and things that people were doing to try and help us and then decided he wanted to look into it further. He was a match and the rest is history. Remember--Ask---Thank---Re-post---Ask everyone to share the post!

cmaxwell78 profile image
cmaxwell78

I shared in the CKD forum about My Daddy Needs A Kidney - Team Callaway on Facebook. The owner of that page found a donor for her husband via social media and was subsequently featured on Good Morning America. Since then, her page has grown significantly in following and she is using it to find living donors for others. Truly inspiring!!

NeedingAdonor profile image
NeedingAdonor

I'm trying some social media such as Facebook, Twitter. I really had to let my guard down to let people know my fiance is waiting for a transplant. It wasnt easy to be vulnerable. I didnt want pity. I want a donor for him more than anything so the courage in my mission took over. I feel so overwhelmed with emotion when I read people's messages here but at the same time inspired. Healthunlocked is a great site! Thank you

KelliC_NKF profile image
KelliC_NKF

It can be very overwhelming to share your story and fiance's need for a kidney but it's great that you are starting to try! Here is a sample letter/post you can use to help create your own: kidney.org/atoz/content/liv...

You can find additional tips under the Big Ask section of this site; kidney.org/transplantation/...

Best of luck to you and your fiance!

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