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Posted on 5. April 2018

PI Shouldn’t Be Compared with Other Diseases

By Pamela S. McKinley

I want to address something serious today. As I am laying here getting my second infusion, I am thinking about conversations I have had with other patients this week. A common trend in the conversations is that patients have caregivers, family members or friends who say: "Well, at least you don't have cancer." I am here to tell these people several things.

First, shame on you. As patients, we need the support of people we love and who love us. It is not a competition of which disease is worse. This is not something that helps us feel better about our disease. Instead, it makes us feel like our stress, fears and journeys are not valid or difficult.

I have battled cancer. About 18 years ago, I was diagnosed with renal cell carcinoma (kidney cancer). I have watched many family members battle cancer. I am not trying to invalidate anyone with cancer, as it is an awful disease. The differences between cancer and a primary immunodeficiency disease such as common variable immunodeficiency (CVID) are many. With CVID, we are told we will be infusing immune globulin for the rest of our lives. With cancer, we know that removing the tumor and starting chemotherapy/radiation will increase the chances of beating it. With CVID, we have no way to know when or where we might catch the cold/virus that might be the end.

Now, I want to share something with you. I was notified last night that an 11-year-old boy just lost his fight against CVID. He caught the flu and his mother took him to the emergency room, where they gave him IV bags of fluids, Tamiflu and told him to rest. He was discharged because the hospital had no room, and he died at home during the night.

This is just one of the many losses during this flu season. For many of us, we hear about these deaths, and we are struck with absolute fear for our own lives. This is when we need our caregivers, families and friends to support us.

Please, don't compare our struggle with another's. Just as all humans are unique, so are our experiences with different diseases. Just hold your loved one, and tell them they are strong and can fight. Encourage your friends and family to donate to the Immune Deficiency Foundation (IDF) (primaryimmune.org) so it can continue to work on finding better treatments and, someday, a cure.

Patients can visit the IDF website to order the Patient and Family Handbook for free at www.primaryimmune.org/…/idf-patient-family-handbook-pri… Love each other. Hold your zebra family and fellow patients, and always try to be zebrastrong.


Pamela S. McKinley is a common variable immunodeficiency patient and author of the Facebook Page CVID: Hoofbeats and Hope. She holds a bachelor of science degree from Arizona State University.

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Comments (2) -

Pamela McKinley
9:13 AM on Friday, April 06, 2018

I wanted to share the blog site for those interested!

https://www.facebook.com/cvidhoofandhope/

Tim Keppler
9:22 AM on Friday, April 06, 2018

I am proud to stand with my Zebra-strong daughter, Pamela!

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