Rare Can Be Good

I’m a regular Red Cross blood donor. I’m not a saint or anything. My father always gave blood, and I remember first giving in high school. I hate needles, but I know it doesn’t hurt, so I just look the other way. Now I give “double red” which to me means they only take me half as often, every 112 days, so it is more convenient to me. They call me when I am able to give again and I can’t say no, so they have a loyal donor.

The other day they called to schedule me and the nice gentleman on the line (probably a retiree volunteer, but I’m just guessing) asked me if I knew why I was such a valuable donor. He reminded me – I am fortunate enough to be what they call “CMV-negative.” Which means I’ve never contracted cytomegalovirus. Apparently by the time most people reach my age 80% have gotten it, and when you figure in who is eligible to give blood, it makes CMV-negative quite rare. So I am a type of rare patient.

But it is a “good” rare. CMV isn’t dangerous for most people, they usually don’t even know they have it. But it can be dangerous for premature infants who need blood, so they use my blood for them. So I get satisfaction in helping little ones, maybe even saving their lives!

 

About the author: Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 30 years experience in marketing research, and more than 15 years in healthcare marketing research.

{ 2 comments… add one }
  • Pamela Harris March 5, 2015, 7:59 pm

    I was CMV-negative when I was able to donate. Nice that you wear a “Rare” tag too. I love helping others any way I can. It helps me deal with my rares. ‘I am triple rare. I just found out about my third. I went 52 years undiagnosed with the first 2. Have only known about them for 14 months. I don’t know how long I have had the third one. Just happened upon the diagnosis listed on a MRI I had in 2013. I’m afraid to look at anymore paperwork. I have almost died several times from my rares. My diseases are little known in the Medical Community. I want to make a difference. No one should suffer the way I have.

  • Melissa K Vemi March 12, 2016, 10:37 am

    I too am CMV negative with and no negative blood they always want my blood I love my hemoglobin isn’t always high enough which frustrates me. I give as often as I can. When I was first diagnosed with MS so they wouldn’t let me give blood but they figured out we’re not contagious and we can’t give it give this disease to anybody so they allowed to give blood go figure.

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