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For Medable’s PAC Members, Blood Donor Awareness Month is Personal

Jan 19, 2021 9:14:55 AM

Every 2 seconds, someone in the United States needs blood. Individuals will be in car accidents, need emergency organ transplants, give birth to babies in critical condition, or have conditions which require regular transfusions and need chemotherapy. Whether they receive whole blood, or red cells, platelets or plasma, when you donate you are making a generous life-saving gift. Richie Kahn, optic atrophy patient advocate and Medable Patient Advisory Council (PAC) member said it best.

 

"Though I only committed to regularly donating blood in the last few years, I can confidently say that it is a simple and incredibly impactful way to make a positive change in the community. By giving blood, you save up to three lives. I can't think of many other opportunities where I can make such a big difference. I just wish I had started donating sooner." –Richie Kahn

Whether donating blood or receiving it, this gift of life is of personal importance to many members of Medable’s PAC.

Jenn McNary, Rare Patient Advocate and PAC member is a mom of a son with an immune deficiency disorder. She counts on the many people who donate so her son can receive the blood plasma he regularly needs.

 

James receives weekly blood plasma infusions. This has made it possible for him to live a fairly normal life without the fear of major infections. James does not have a working immune system, he has primary humeral immune deficiency. Basically, this means that he never develops the immunity to most viruses and infectious conditions to which the general population is generally immune. Before he started getting his infusions, James, by age 10 was hospitalized multiple times with massive infections affecting his ear and skull cavity, body and throat. One such infection caused him to be hospitalized,  intubated, and sedated for almost a week because he lost his airway due to swelling. I am grateful to the people that take the time to donate blood and blood plasma because to families like mine, it makes a huge difference in quality of life. James doesn’t have his own immunity, so he borrows it from the hundreds of thousands of people who donate plasma.” –Jenn McNary

Sumaira Ahmed, is the Founder of The Sumaira Foundation for NMO, and Medable PAC member. She lives with Neuromylelitis Optica.

"Plasma has saved my life not once, but twice. Thanks to a procedure called plasmapheresis / plasma exchange [PLEX], my care team was able to restore some of my vision and all of my mobility that had been severely affected from relapses due to neuromyelitis optica. I am eternally grateful for those who donate plasma; it is because of them that I am living the quality of life I live today." – Sumaira Ahmed

Both James and Sumaira need plasma donations. Plasma is the liquid portion of blood that suspends the red and white cells, and platelets. Plasma helps to induce clotting and control bleeding. Plasma is important depending on the patient’s underlying disease. Allison Kalloo, founder of Clinical Ambassador and iParticipate Inc. and PAC member, is a regular plasma donor.

“After always being denied the opportunity to donate blood at blood drives (apparently, no amount of spinach consumption was ever enough for me not to be labeled "too anemic" for the Red Cross), I was surprised and delighted to discover that my iron levels are within range for plasma donations. I have been a twice-weekly plasma donor for two and a half years because I think my aversion to needles is a small price to pay to make a life-saving contribution.”

 –Allison Kalloo

For me blood donation became personal after suffering a hemorrhage after my third cancer surgery. I remember the doctor calling for pints of blood as I was being rolled into the OR for emergency surgery. I was never so thankful for the generous people who made sure I had the blood I needed when I needed it the most.

“I don’t donate blood, I give it and within that nuance consider it as a gift to another person who is in need. It’s not a gift in the traditional sense, but more important it truly is the gift of life. I think the decision to give blood becomes easy – maybe even heroic - when a person considers the impact on another’s life. It might even be that one offering that saves or extends a life.” –Paul Kidwell, Parkinson Caregiver and Medable PAC member

My mother instilled in me the importance of blood donation. I was always impressed with her many “10 Gallon Donor” pins dangling from her keychain. She never missed her regular blood donation appointments. As a child I couldn’t wait until I hit that magic age and weight where I could start to donate blood.

After numerous attempts at donating, I discovered I have a blood clotting disorder which makes it difficult to ‘fill a pint’ in the required time. There are many reasons a person may not be able to donate blood, but there are still things you can do to help. I am still able to donate blood for medical research, and as with Allison, she donates plasma. You can host a blood drive at your place of business, community organization or school, help spread the word about the importance of donating on your social media and visit your local blood donation center and volunteer to help.

In the time it took you to read this, approximately 622 people needed blood in the United States. Jenn, Sumaira and I cannot thank Richie, Paul, Allison and blood donors enough for their life-saving gift. I hope during Blood Donor Awareness Month you consider donating. Here are some organizations that can help you find a local blood donation center:

AABB

America’s Blood Centers

American Red Cross

Armed Services Blood Program

Blood Centers of America

 

 

 

Joan Venticinque, PAC member

Written by Joan Venticinque, PAC member

As a two-time cancer survivor and advocate, Joan brings her first-hand experience augmented by the experiences of others to provide the patient perspective to research studies and the PAC. Professionally she has worked in cancer patient support and serves as an advocate member on numerous funded research grants and scientific review committees.

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