Young woman searches for live kidney donor sharing her extremely rare blood type

Sana Ashoori is in a race against time — and the odds — as she searches for a life-saving kidney donation.

A rare disease has left the young Calgarian with just 30 per cent kidney function and she will ultimately need a transplant.

"I think mainly for my future," said Ashoori, 20, who struggles with fatigue, anemia and a number of other health issues related to her illness.

Ashoori and her family were advised to start searching for a donor early — before she is added to the transplant list — because she also has an extremely rare blood type, known as the "Bombay" blood type.

While she could take a kidney from someone with another type, doctors say a kidney from someone with the same blood group reduces the risk her body will reject the organ.

"What if I don't find a donor? Or what if I do find one and then it's not really a compatible match with my blood type? And then rejection happens? That whole process is very scary to think about."

Bombay blood type

People with the Bombay blood type lack an H antigen, a basic protein that is the backbone of other blood groups, according to Dr. Dave Sidhu, head of transfusion and transplant medicine in southern Alberta.

The introduction of another blood type in these cases can prompt the formation of antibodies, which can ultimately lead to organ rejection.

Some people already have these antibodies circulating in their blood, further increasing the likelihood of rejection.

The trouble is, the Bombay blood type is extremely rare in Canada.

"The best option for finding a compatible match is looking within her own ethnic population first," said Sidhu.

That's because this blood group is more common in South Asian populations.

According to Sidhu, approximately one in a million people of European descent have the Bombay blood type compared to about one in 10,000 people from India, for example.

No one in Ashoori's family, originally from Afghanistan, has been identified as a match.

And despite their efforts reaching out to other South Asian communities across the country, and even internationally, they have yet to find a suitable donor.

More awareness needed

Ashoori's story shines a light on the need to have as many people from as many different backgrounds as possible in the Canadian donor pool, doctors say.

"The best matches are often coming from people who have immigrated from similar parts of the world. So the more diverse donors we can have, the better the chance — particularly for people coming from some of these small ethnic minorities — for finding a very suitable or better match for them long-term," said Sidhu.

According to Sidhu, while the transplant could be done with a kidney from a live or deceased donor, a live donor will give Ashoori the best chances for success.

Her mother, Shaima Rahimi, said the family is working to raise awareness about live kidney donation within South Asian communities as they scour the country for a donor who can help.

It's been an uphill battle, she said, because she's encountered a number of people who don't understand the concept of live kidney donation.

"We have been trying to reach out to people to come forward. Also, we are trying to educate people to know that they can live on one kidney. It is possible to live on one kidney, and the other kidney can save a life," she said.

There can be a number of challenges, according to Sidhu, including language barriers, misconceptions about risk, cultural differences and a lack of access to information.

"That's why it's always more successful when we have community members try to create community awareness."

Information on becoming a living donor:

• Canada's Kidney Paired Donation (run by Canadian Blood Services)
• Southern Alberta Transplant Program - Calgary
• Living Donor Services - Edmonton

"It's well known that living donors can donate a kidney very safely and … live a long and healthy life with their one remaining kidney," said Joyce Van Deurzen, executive director of the southern Alberta branch of Kidney Foundation of Canada. She noted extensive testing is done ahead of time.

In Alberta, while the direct costs of donating a kidney are covered, the Living Donor Expense Reimbursement Program can help cover some out-of-pocket expenses for living donors — including some travel expenses — even if they're from other provinces or other countries, she said.

Meanwhile, Ashoori's family continues to search.

"It's hard," said Rahimi, holding back tears.

"As a mother, I'm asking, as a human, come forward, save a life. Start with the testing so it can change my daughter's life."

Ashoori, who has put her dream of becoming a nurse on hold due to her failing health, is hopeful the right person will come forward.

"I think it would be a really good blessing because kidneys are a vital organ. Without them, I cannot live," said Ashoori.

 "I'd get to be less stressed about my future. And hopefully, in the future, I can also help educate other people and provide more donors to other people who are in need."