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Interview with Steffi Mac (Blood Cancer Survivor) Marrow Awareness

Interview with Steffi Mac (Blood Cancer Survivor) Marrow Awareness

The Marrow Story was just something that was lurking around as far as my life story is concerned, but I never really brought it on the front seat and couldn't focus on it.

The Marrow Story

After undergoing my bone marrow transplantation, I dove back into life, eager to make up for the year and a half I had lost to treatment and recovery. I pursued my dreams and goals with fervor, driven by a sense of urgency to accomplish them quickly. It felt like there was a clock ticking in my head, reminding me of the time I had already lost.

I pursued my dreams so rapidly that I pushed aside my identity as a cancer survivor and patient because I wasn't ready to confront anything related to cancer. I documented my cancer journey in a book, and for a while, that was the extent of it. However, deep down, I felt a desire to do something to educate people about bone marrow transplantation, although I wasn't sure how to proceed.

In June or July 2019, the concept of The Marrow Story began to materialize after I was given the chance to deliver a TEDx Talk during the last week of June. This opportunity prompted me to reflect: "I survived cancer, but why is that significant? Many others have also survived cancer, experiencing numerous side effects, yet I haven't faced such challenges to that extent." It dawned on me then that if I were to speak on such a prominent platform, it had to be about bone marrow transplantation.

If nothing else, it could be educative or something that helps people understand it. Everything started coming back to me with full force about what I have been through. That's when I understood the magnitude of my journey and that I survived because the process was made easy by God's grace and everyone's blessings that I managed to get a donor.

After the TEDx Talk, Datri reached out to me and asked, "why can't we do something together," and that's how I got on board. We did several drives at colleges and universities where I was teaching because we wanted as many young donors as we could find, but then the COVID pandemic happened, and everything came to a standstill. When the lockdown came, I was actively working and had too many sessions to look after. We were struggling as teaching faculties with the online system, and I too was busy doing that.

The moment all my sessions were done, that's when I suddenly thought, what should I do now because I didn't have anything else to do and then it just came to the front, and my journey began. All of this was conceptualized in just two hours, and I just called a dear friend from Datri and explained my idea and that I needed their help since the only donor I knew was my own donor. I do not want to publish her story first because then The Marrow Story would become about me, and I didn't want that.

 

And I wanted it to become about the people who are going to be there. I wanted to publish stories about Indians as my target audience was Indians since we have such a large population. Research says if any major city from India had every person between the age group of 15 to 55 signed up to donate their marrow with any registry functioning in India, we would build the world's largest marrow registry.

I have interviewed 55 people so far, including marrow donors, bone marrow transplant survivors, and other cancer survivors. Some stories talk about friends and families who have lost their loved ones to cancer. We also did a special series on people who have mental challenges. Such people need to voice their opinions because I thought that was the only way to normalize the conversation around bone marrow transplantation, donation, cancer, Depression and mental health.

Challenges Faced

The greatest challenge lies in persuading individuals to step forward and share their stories. There have been instances where I've published stories without the individual informing their friends and family. Later, when their family discovers it, they request its removal as they wish to keep it private from relatives. Some people have approached me expressing their desire to publish but are hesitant to have their family find out, to the extent of not wanting to share their picture. These challenges are tough because there are those who genuinely wish to share but feel pressured by their families. We reside in a society where cancer remains taboo.

I've encountered individuals who request anonymity because their parents are in search of a bride or groom, fearing that if society discovers their cancer history, it may affect their chances. It's deeply disheartening and upsetting to witness such judgment based solely on health records. The fact that people prioritize health records over qualities like kindness, humanity, profession, career, and resilience is shocking. Changing this mindset may take another 50 years, and while we can strive for change, there are limits to what we can achieve. Our focus should be on educating the next generation to be more understanding and compassionate.

Myths Related to Donating

People have started understanding platelets, plasma or blood donation, but it's not the same with bone marrow. With bone marrow, people suddenly think that it is like an organ donation.

The first thing to know about bone marrow transplant is that a bone marrow transplant is not a surgery; it happens to be one of those very rare kinds of transplants where there is no Surgery. Stem cell donation is exactly like blood donation; you are just given an injection, which increases the production of marrow in your body. Through a line in your hand, the marrow is extracted, collected in a bag, and the rest of the blood is put back in your body. Since you are donating something that you had produced extra, you are not losing anything.

Even if you want to donate the marrow from the pelvic bone in the lower back, your body only takes 4-6 weeks to produce all that marrow back into your body. It's exactly like blood donation. Many myths need to be busted, but it will take one little talk at a time.

How Datri facilitates marrow drives?

Datri was founded in the mid-90s. The person who found it had a friend who needed a bone marrow donor. People who have been actively researching bone marrow transplantation have said that there is always a strong possibility of the patient finding a matched donor within the same ethnic group. In Datri, when you fill a form, there is a particular section that will ask you what community or ethnic group do you belong to.

Datri corporates and collaborates with colleges and universities. Their representatives conduct orientation programs where they explain the entire process to the people and orient them into understanding that bone marrow donation is as simple as blood donation.

To register as a marrow donor is the easiest thing to do because there are two cotton buds, and they take a swab from one side of the cheek, put it in a plastic bag and take one more. All they need is the saliva sample, and then they sent it for the test. There is an HLA match, and these test results are entered in the records so that if I need marrow for donation, I just need to give my HLA test report, and Datri would be able to find matching donors by entering my details into their database.

 

If they find that someone is a close match, then they reach out to them and say that they have the opportunity to save a life as someone is in urgent need of bone marrow, and you are a possible match for them.

The more the number of people on the registry, the more hope and faith we generate for patients and their families. We insist people not to back out at the last moment because it takes away the hope of the patient and his/her family.

Every fourth house now has cancer. Shortly, we will find the vaccine for COVID-19, but cancer is here to stay. Its impact may reduce eventually, but I cannot say this with confidence.

Things you want in the near future

Bust some myths around bone marrow transplantation. Bone marrow transplantation is not a surgery; stem cell donation is not a surgery; both are just similar to blood donation with a slightly different procedure. If you are between the age group of 18 to 55, then do register for marrow donation. You can go on to Datri or other bone marrow registries. In COVID-19 times, you can order a kit at home, follow the instructions, seal it again and give it back. Talk about cancer, and call it cancer, because when you address the enemy by its name, it reduces its power. Read about cancer because you need to educate about it.

It's essential to educate people who have never had cancer instead of telling cancer patients what they should do and what not. Don't see your daughter or son as different. Don't discriminate. Just treat it like a normal disease.

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