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Rosemary, Volunteer Mentor (@rosemarya)

Celebrate your Transplant Blessings

Transplants | Last Active: Apr 18, 2017 | Replies (28)

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@IWantToBelieve

That is a very good point @chattykathy. I have not looked at transplants the same way I do disabilities. A college age family member has a disabitliy (Ankylosing Spondylitis – form or RA) and we have experienced many well meaning, but ignorant, comments regarding her illness. My husband and I had the same experience when our first daughter passed away at 7 months. Comments like, “You’re young, you can have more children,” were meant to be encouraging but hurt instead. What I have learned from those two situations is that people are ignorant and society is not comfortable when others are hurting. Most people want to fix things and when they can’t they just avoid the subject. It is a sad statement about our society but thank you for helping me look at the education I have to do with others in a different light.

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Replies to "That is a very good point @chattykathy. I have not looked at transplants the same way..."

@lcamino, Thank you for sharing. I cannot imagine the pain that you and your husband felt upon the death of your baby daughter. I am sorry for you to have experienced that. As you said, people mean well, but the words do not match.

How is your college age family member handling her disability? Have you seen the discussion in bones and joints about ankylosing spondylitis?
https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/?pg=1#post-223109
I firmly believe that education is vital to developing a sensitivity and awareness.
Rosemary

@rosemarya,

Once again a tardy response. Thank you for your condolences. My husband and I have come to terms with losing our daughter and have lead numerous grief support groups using GriefShare materials. GriefShare.org is a great resource and way to find a supportive community anywhere in the U.S.

A family member has had AS since she was six so she has gone through many phases but has come to accept her disability and manages it well. This is her first year away from home so she has had a bit of a steeper learning curve but she is doing well. I know there is a discussion but I have not explored it yet. She is more independent now (at college vs. home) so I’m trying to take better care of myself. I joined a discussion group for caregivers because my mother with Alzheimer’s just moved near me but I can’t keep up with three discussion groups – too overwhelming. I’m trying to put my health at the top of the list for a change and I’m getting there. Prior to Mayo I got much of my AS information from the Spondylitis Association of America which is a great resource.

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