Kamryn Can’t Wait – She Needs Your Help

Posted May 8th, 2017 by Be The Match and filed in Patient Stories
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Kamryn is 11 years old. She’s an only child and a straight-A student who loves singing and playing the keyboard. While there are many typical things about this vivacious girl from Oklahoma City, she also faces a life-threatening battle: sickle cell anemia.

Kamryn, searching patient

Kamryn needs a bone marrow transplant or her life will be cut short. It is the only known cure. This is the reality her family must face every day, and Kamryn can’t wait. She has had five potential matches, but none were willing or able to donate marrow.

How you can help

Joining the registry is one of the first – and perhaps best – things you can do to help Kamryn and patients like her in their search for a match. You can support Kamryn by joining the marrow registry at www.Join4Kami.org. By joining Be The Match Registry® as a potential marrow donor, you can actually save someone’s life – how amazing is that?

An astounding 70 percent of patients don’t have a fully-matched donor in their family. The bottom line is this: Waiting patients are depending on your involvement with Be The Match. And while the outcome is most certainly life-changing, it also has the potential to be life-saving.

Younger donors are especially needed at this time. While people of many ages are encouraged to register, it is recognized that the younger a person is, the healthier their bone marrow likely is. Put simply, more healthy bodies means more possible matches for patients like Kamryn.

Increased odds

Sickle cell disease affects about 70,000 – 100,000 people in the United States alone. It’s most common among African Americans and Hispanics, but is also found in other ethnic and racial groups.

A patient is most likely to match someone of the same ethnic ancestry or ethnic background. For patients like Kamryn, who are African American or Black, the chance of finding a suitably matched, available donor on the registry is 66-76%.

Be The Match is constantly looking to expand the ethnic diversity of the registry. It increases the variety of tissue types available, and ultimately helps more patients find the match they need.

Join today to help patients like Kamryn stop searching – and start thriving.

Sickle cell disease conquered through transplant

Posted September 13th, 2016 by Be The Match and filed in Patient Stories
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As a young adult in her early twenties, Constance was embarking on the next stage of an already successful modeling career. Photos of her had already appeared in magazines, and she was beginning to work with designers from popular reality television shows.

But, the sickle cell disease (SCD) she had been coping with since birth suddenly got worse and caused her modeling career to take an unexpected detour. “I tried to work through my disease and the pain, but my body just couldn’t take it,” she says.

sickle-cell-illustration_300pxSCD is an inherited blood disorder where red blood cells become hard, sticky and sickle-shaped. These cells can’t carry oxygen well and they block blood flow. Patients have repeated episodes of excruciating pain and worsening permanent damage to vital organs.

So instead of runways, TV sets and photo shoots, Constance was spending more and more of her time in hospitals due to pain episodes and other harmful effects caused by the disease.

“I was either hospitalized anywhere from 3 to 10 days or rushed to the ER every month,” she recalls. “I had to bow out of the second half of my modeling contract because I couldn’t get healthy enough to even leave my house, let alone the state.”

Transplant offers hope of a cure

Today, Constance is a healthy 29-year-old ─ and one of a growing number of people with SCD who had treatment with a blood or marrow transplant, the only known cure for SCD.

Constance had transplant in 2012, when she was 25 years old. Her donor was her younger sister, Samantha, who was a 10 of 10 HLA (human leukocyte antigen) match.

Constance, transplant recipient

Constance, transplant recipient

Like many transplant recipients, Constance calls the day of her transplant “my new birthday” and her second chance at life. And like many transplant recipients, it also took a while for Constance to adjust to life after transplant. Constance remembers that it was only after her “first new birthday,” when she was finally off of all her medicines, that she told herself, “Okay, this is real. You have a life now.”
And her life now is very busy. Her modeling career is back on track and she’s sharing her experience with others ─ including writing a book.

Reflecting back on her time before transplant, when SCD limited her modeling career, her social life, and her plans for the future, Constance says she feels thankful every day. “I never ever could have imagined that I would have the life I have now, and that I would be able to do the things I can now.”

September is Sickle Cell Disease Awareness Month – help us spread the word by sharing our Facebook post about SCD awareness through our Patients Connect page. And to learn more about Constance’s story, visit her website at road2thecure.com.