Sickle Cell Disease and blood transfusions

June 17, 2016 at 9:00 am

sickle-cell-blog

Sickle cell disease (SCD) is a chronic genetic blood disorder inherited from both parents. Having sickle cell trait (inheriting the gene from one parent but not the other) is an advantage against malaria, which is why SCD primarily impacts people of African, Mediterranean, Middle Eastern, and Indian descent.

But the disease itself (which happens when someone inherits genes from both parents) is devastating.

When someone has SCD, their red blood cells are shaped like stiff crescents instead of flexible discs. These pointed cells can snag on blood vessel walls, causing blockages that prevent oxygen from reaching tissues, incredible pain (called a crisis), and damage to a patient’s brain, eyes, internal organs, joints, bones, and skin. These complications can be life-threatening.

Approximately 1 in 500 African Americans (100,000 people in the U.S) have SCD, though as many as 1 in 13 African Americans are carriers of sickle cell trait.

Treatment of SCD often includes chronic blood transfusion therapy to increase the number of healthy red blood cells in the bloodstream, even when a patient is not actively sick. Transfusions can reduce the chance of stroke.

Says Bloodworks Research Institute’s Dr. James Zimring,

The more we study the disease, the more we understand that transfusions are needed earlier and more frequently than we have appreciated.

Anyone who receives regular blood transfusions is at risk of developing antibodies against antigens in other people’s blood, called alloimmunization. The more antibodies someone makes, the harder it becomes to find blood they can still receive.

Transfusion for transfusion, patients with SCD are more likely to develop antibodies than someone without it. Although science is working hard on it, no one understands all of the reasons why.

Most of us know that our blood type is either A, B, O or AB, and Rh positive or negative, which correspond to antigens on the red cells, but there are actually hundreds of other antigens in the blood.

Dr. Meghan Delaney, BloodworksNW’s Medical Director for Transfusion Service at Seattle Children’s, says:

When sickle cell pediatric patients get transfusions from our blood bank. they require specially matched red cells. Most patients receive blood that’s matched for ABO and Rh,

Other than matching blood to patients, there is no way to prevent a reaction besides not transfusing. For some patients, this can to lead delays, substandard care, and even death.

BloodworksNW’s Immunohematology & Red Blood Cell Genomics Reference Laboratory performs the extended blood typing and matching for patients in the community. Sickle cell patients also have blood typing done by genotype, or molecular methods, since there tends to be blood group differences in people of different ethnic backgrounds that can make figuring different blood types more complicated.

Dr. Zimring explains:

Antigens tend to be within an ethnic group. You are more likely to be a match to someone who has a similar ancestry as you do. Therefore, the more people who have a similar ancestry that donate blood, the more likely it is that  compatible blood will be available.

Dr. Zimring hopes to uncover why SCD patients are so difficult to transfuse. He and BloodworksNW’s Dr. Krystalyn Hudson are studying the process by which the immune system makes antibodies to transfused red blood cells.

Understanding why sickle cell patients make antibodies at a greater frequency might help scientists understand why any patient might make an antibody.

This awareness will help researchers formulate new therapeutic approaches, which will help both sickle cell patients and others receiving regular transfusions.

One thing is for certain:

Sickle cell disease would benefit from increased resources for delivery of medical care and research.

More donors of all ethnic backgrounds are needed to help patients in our community. Schedule your next donation


Chad’s story: a dad giving back for his son

June 16, 2016 at 7:00 am
bookingsuite-blog

Chad’s colleagues donate blood at the drive he organized.

When Chad Etsell’s coworkers at Booking.com heard that BloodworksNW was having a shortage of certain blood types, they wanted to go into a donor center to donate blood as a group.

Chad figured, why not set up a blood drive in Booking.com’s Seattle office instead? Within a day and a half, thirty-five people had committed.

Blood donation and donated blood mean a lot to Chad and his family.

Blood donations literally saved my son’s life, so it has a special place for me. I want to donate as much as I can whenever I can, and encourage other people to do the same.

When he was just over one year old, the Etsell’s oldest son, Henry, lost two thirds of his blood into his abdomen after a routine operation turned into an emergency.

After the operation he was very pale and lethargic and not his normal self, even considering having an operation, and had massive bruising and massive swelling.

Tests showed that Henry had hemophilia, an inherited disorder caused by missing clotting protein, called factor. Henry received factor infusions to stop the bleeding and blood transfusions to get his blood level back to normal. He spent four or five days in Seattle Children’s Hospital.

Today, three-year-old Henry receives his daily infusion of factor and immune therapy treatment like a champ.

Chad and Graham helping Henry with his daily factor fusion

Chad and Graham helping Henry with his daily factor fusion.

It doesn’t phase him – he just watches his cartoons or eats breakfast while we’re doing it and it’s totally fine.

Chad is the only one in his family who can donate blood: his wife, Nicolette, and youngest son, Graham, also have hemophilia. He takes pride in being a blood donor.

Chad gives with help from Henry

Chad donates blood with help from Henry.

It’s something you do because it’s important and because it helps people. The stats I found really hit it home: one in four people is going to need at least one transfusion in their life. It’s guaranteed someone very close to you is going to need a blood transfusion.

That’s a pretty huge impact for something that’s relatively small.

Chad’s encouragement paid off: Booking.com registered 44 donors, with 32 first time donors at their drive in May!

Want to help? Schedule your next donation or organize a blood drive.

Every 2 Seconds

June 9, 2016 at 2:09 pm

We’d like to thank Mercer Island High School Senior Meghan Frisch for creating this amazing video highlighting the need for donated blood.

Molly’s cord blood story: Reflecting on a great moment

May 6, 2016 at 3:53 pm

Safeco Field

When Molly Olsen was in labor with her daughter Judith in 2006, one of the nurses at Swedish Ballard asked her if she wanted to donate cord blood.  She agreed, signed the consent forms, and paid no attention to the collection while she bonded with her baby girl.

Molly didn’t even remember that she had donated Judith’s cord blood until she got the call that she’ll never forget in 2011.

It was the middle of the day. I was walking out to the car, putting my daughter in the car as well. The phone call was real quick: “it’s BloodworksNW. We wanted to let you know that the cord blood you donated has been matched with a 42-year-old man with leukemia.”

She thought at first that she was being asked to donate bone marrow; the situation didn’t hit her right away.

And then she realized the donation had a personal significance too.

I just thought of Michael, and I couldn’t believe that this thing I had done so offhandedly might have saved someone’s life.

Michael Josh  Molly

Michael, left, poses with Molly and another friend.

Molly’s close friend and colleague Michael died at age 30 from leukemia, the first person in her adult life to pass away.

He was a very dynamic person, a writer and artist, and had just written a play. He made the most of his life, even knowing it was finite in a very extreme way.

Michael kept his illness a secret from Molly and his other friends until just before he went into the hospital; Molly was shocked and devastated when she found out. She recalls that he didn’t seem sick until he received a bone marrow transplant from an unrelated donor.

She moved to an apartment closer to his to help out after his transplant, and when she visited him in the hospital, Michael would take Polaroid pictures and put them up on his wall.

After Michael died in 1997, Molly moved to Seattle.

Today, she’s a Senior Program Manager for a mobile messaging company and enjoys every moment with her grade-schooler: “We have the most fun!” Molly says.

molly-judith

Judith understands that someone out there had a chance to live because of her.

She was a little young to make all the connections, but she knew that something good had happened because she was born. It was really a great moment.

Because cord blood donors are always anonymous, Molly and Judith will never know the outcome, but they’re happy they were able to bring hope to someone who needed help.

I was really grateful that you guys called me. It would have meant just as much to Michael.

Dedication to saving lives runs in her blood!

April 15, 2016 at 12:11 pm
colleen-blog

Colleen with her grandson and furry friends

Dedication to saving lives runs in Colleen Abrams’ blood:

My mother was a blood donor, and you just pick it up from the family.

When the Mountlake Terrace resident retired from her remote administrative position with University of Alaska Fairbanks three years ago, she was excited to have more time to focus on family and community service. She switched from donating whole blood to platelets, and has become one of our most dedicated and active volunteers - she worked 113 shifts in 2015, totaling 454 hours!

Colleen has scheduled volunteer shifts in Everett and Lynnwood, and fills in at North Seattle as well. She loves the positive people that come in to save lives.

This is one of the most worthwhile organizations to be a part of because of the positiveness of the people. The staff is absolutely marvelous – all the people you get to work with are, both professional and volunteers (including the donors). It’s something to look forward to each day.

She enjoys talking with donors and learning about the issues that matter to them – for example, a man recently talked with her about his son’s experience with autism.

She also enjoys the fun coincidences.

I have only had two people come in with birthdays on February 29th, and both of them came in during the same shift!

Colleen has seen firsthand the lifesaving power of donated blood – her brother-in-law has MDS (Myelodysplastic syndromes), a disease where the bone marrow stops producing red cells.

At one point he had to have four units of blood and one unit of platelets in one sitting. He was getting blood transfusions monthly.

When she’s not volunteering or donating platelets, Colleen feels blessed to regularly travel down to Portland to visit her new grandson, Silas, and go on walks with her Cavalier King Charles Spaniel puppy. She’s active in her church, and enjoys taking her trailer camping – it also gives her a place to stay in Portland when Silas’ other grandma visits at the same time!

She’ll have to miss a few of her BloodworksNW shifts in May when she heads to Haiti to hand out glasses at free medical clinics. It’s her third time going, and she’s found the experience rewarding and eye-opening.

BloodworksNW is grateful to have volunteers like Colleen who care so deeply about their local and global communities on our team.

Want to join the BloodworksNW volunteer team? Learn more at bloodworksnw.org/volunteers

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