The Desi Buzz US Bureau Chief Dr Shabana Parvez, MD FACEP (ArlingtonIntegrative.com) spoke with Aisha Chaudhry, author of the memoir Family Matters, a compelling narrative that explores the themes of resilience, love, and purpose. She is a passionate advocate for organ donation, dedicated to raising awareness about its life-saving impact. As a mindset and happiness coach, Aisha empowers individuals to cultivate positivity and achieve personal fulfillment. Her work reflects her commitment to inspiring change and making a difference in the lives of others.
Dr Shabana Parvez: Could you tell us about your background, family, and educational journey? How have these influenced your commitment to organ donation awareness and advocacy
Aisha Chaudhry: My background stems from being born into an intercultural family. My parents were born in India and Pakistan and emigrated to Kuwait and then both moved to the UK. My dad was 11 years old at the time, and my Mum was in her early 20’s when she married my dad.
Growing up in a multi-lingual and multi-cultural home showed me how diversity can exist within my own family since I grew up listening to Arabic, Urdu, Punjabi and English. It also showed me how inclusion was important but how life wasn’t always equal with opportunities regarding health.
I realized how education was going to play a part in talking to people about organ donation and how telling the story of my family would carry possibly more weight than if the same information came from someone within the medical sector, which people didn’t always trust based on their own experiences, or as a result of what they may have read in the media. My job was therefore to present the side of the family which most people can more or less relate to as being part of.
Family: My story is about my mum and dad, and us four siblings including my twin sister and two brothers.
Educational. I studied law and qualified as a Barrister in England and Wales although I don’t practice as a lawyer. I use my voice sensitively and as an empath make all efforts to provide comfort when speaking to anyone willing or curious to learn about the topic of organ donation awareness as someone from a family with a lived experience.
With such a topic, one can’t push a conversation aggressively about wanting the person to be a hero. One needs to be considerate and understanding that it really isn’t easy to donate. I would hope my educational skills in law have helped me be tactful and clear in a way that the listener is comfortable when they hear my story.
Dr Shabana Parvez: What personal experiences inspired you to advocate for organ donation within the South Asian community?
Aisha Chaudhry: I saw how most of the patient’s waiting for a transplant were white. I realized that the pool of availability for non-white donors was really low from people willing to donate after death or even when alive to people they know through living donation, or to complete strangers as altruistic donors.
I saw that just because my mother lost her fight, the problem of enough people willing to donate had not gone away. In fact it has gotten worse. Essentially, I wanted people to have the same equal chance of receiving a donation regardless of their background, but given the numbers were so low, I felt compelled to focus on highlighting the need amongst the South Asian and Black community.
Dr Shabana Parvez: Can you share some of the challenges you’ve encountered in raising awareness about organ donation, especially within BAME (Black, Asian, and Minority Ethnic) communities?
Aisha Chaudhry: Organ donation awareness isn’t just a taboo topic and an issue that is hard to discuss due to culture and religion but reaching people with simple information is also a challenge. There is so much more information available on social media, at doctor’s surgeries, at community events and online, but people don’t seem to know it is there to access unless it’s right there in front of them.
Accessibility is so important so this is one challenge I am going to tackle though translations of the book. That is why I am getting my book translated to different languages, so that if English isn’t someone’s first language, they can read about my story in Urdu, Hindi, Arabic and German.
Dr Shabana Parvez: You have a powerful story and have shared it through various platforms, including articles, podcasts, and webinars. What message do you hope to convey to those who may be hesitant about organ donation?
Aisha Chaudhry: There is no guarantee with any medical procedure that all will go smoothly, but a lot of tests are done to ensure you whether or not you could be a match, and lots of checking in and questions are asked to make sure you want to go ahead. There will be many points where you can ask questions once you show interest in wanting to donate while you are alive, and also about what happens if you decide to donate after death.
Get informed, talk to donor families and recipients who have been donated or received a donation to learn about how it was for them. Talk to families who know someone waiting if you need to know how you’ll be helping someone’s quality of life will improve.
Look up people’s stories on the internet which are shown by organizations and charities so you can see the impact donating makes on you and them.
Imagine if it was you or if it was someone you loved who was fighting to survive. Would you be able to watch their life span decrease if you knew it was possible to help improve the quality of their life.
Living donation from a family member is usually more successful. With the kidney pairing scheme, even if you aren’t a match for the person you want to help, you could be a match for someone else.
To anyone hesitant, contact any doctor or health care center who has a team or look on the internet and chat to people for information and guidance. No one should be forced into anything they are not sure about, but it’s likely if they talk to someone in the field, they can have their questions answered.
Watch the online videos of people who have received a donation of some sort to see how life has changed not just for them, but their family too. Organ donation isn’t always a cure, however it gives the patient a chance to live an improved life to what they had, being tied to a hospital or machine to get treated. Your decision to help save or improve the life of others means the hope they had was worth the wait.
Dr Shabana Parvez: Your book, Family Matters, has resonated with readers. What inspired you to write it, and what key message do you hope readers take away regarding organ donation?
Aisha Chaudhry: My mother was a fighter so I was inspired to write it to tell her story, so people could see how loving she was, but also how desperate our situation was to live the life she had with her husband and children. I realized after my mum died that I wanted to tell my story so people could see how a simple conversation could give someone the idea that they could help save a life. I wanted to let readers know that our family life with our mother could have been for many more years had she been able to receive a donation which ideally came from a person from a similar ethnic background. I didn’t have the voice to articulate this when I was younger, but the strength in my voice and the message gets stronger every day, and talking to people who have read the book and the feedback has shown me people are simply not informed or aware about what donation is, and how easy it is to think about doing.
The key message is to talk to your family about your wishes, register your intention whichever way you want so your family doesn’t have to do it for you, and know that it only takes one person who understands the importance of the Gift of Life to be Selfless and not Selfish.
Dr Shabana Parvez: In your experience, how does the cultural perspective on organ donation within South Asian communities affect people’s decisions?
Aisha Chaudhry: Culture is a strong reason as to why people don’t donate. People are uncomfortable talking about the topic. They don’t like to see people suffer and even suffer themselves at the idea of donation. Talking about health, disease and death is culturally a taboo topic in some South Asian communities. Cremation would make you think it seems easier to donate due to reincarnation beliefs versus burial and needing to bury the body whole, but people still worry about what will happen to the body after death. In turn this makes it harder to consent to donation,
Dr Shabana Parvez: What role do you see family conversations playing in increasing organ donation rates? It is only by talking to your family that a level of comfort can be provided to be heard about your views and wishes. It’s far better to talk while you are alive than to have to leave the difficult question that could be asked to your family at death.
The more engagement and dialogue that happens with the family, the easier the topic becomes to discuss.
Donor rates would increase since living donation could become an easier way to broach the idea of donation.
Furthermore, if you already know what the wishes of your family member is, and are able to honor the wish because you heard it from their own mouth then everything is clear and there is less uncertainty.
Dr Shabana Parvez: How can these dialogues become more normalized?
Aisha Chaudhry: If people in a community talk or say they met someone at a community event, or through reading a book, then they can see just how much the struggle is for those families who are waiting for a donation.
Aisha Chaudhry: The more the topic is talked about at home, in the educational system, on television or the radio, the more people can relate to someone they know, and realize organ failure could happen to anyone, and luckily there are lifesaving treatments out there through transplantation.
Talking or the radio, reading material in books and magazines or newspapers usually leads to a chain reaction of dialogue and feedback. Campaigns and outreach at community events also lead to the dialogue becoming more normalized.
Dr Shabana Parvez: Could you tell us more about your recent engagements and recognitions, such as your awards and talks at the British Parliament and the NHS Blood and Transplant Webinar?
Aisha Chaudhry: The Award at the British Parliament was on September 20, 2023 at the British Parliament for volunteer work through an invitation from Upahaar Charity. The charity was invited to Celebrate Organ Donation Week. Amongst the 50 attendees, I met donor families and recipients and listened to a Member of Parliament acknowledge that more needs to be done amongst the South Asian Communities. I was the only person present who was advocating and campaigning who was representing a family who did not receive a transplant. This highlighted that the problem is still ongoing and the event at Parliament showed how more campaigning is being done, since data showed how many more people were donating blood, organs, stem cells and tissue.
Webinar August 23, 2024 Speaker for NHS Blood and Transplant Team was a Talk to the staff during South Asian Heritage Month on family experiences and why these conversations about Organ Donation are so important.
I highlighted that although many patients are successful in receiving a transplant, many remain on life saving treatments such a dialysis which essentially is a lease for life. The need for organ donation has increased, not decreased amongst the South Asian community. Over the last 23 years since my mother died, the number of kidney patients has increased and given people’s dietary and lifestyle behaviors, it has led to more people needing a transplant as a result of their kidney’s not working properly.
The Question and Answer interactive session showed how engaged the attendees were in the topic since they were keen to make immediate differences, for example by agreeing to go home and to talk to at least 3 people about the topic, and to register their intention on the organ donor register. Your intention to donate can also be withdrawn if you change your mind. This highlighted that the choice is yours.
Dr Shabana Parvez: What future projects or goals do you have to further your advocacy for organ and blood donation awareness?
Aisha Chaudhry: I recently became part of the Patient and Public Advisory Group and the EDI Steering Group for Equality, Diversity and Inclusion at the UK Organ Donation & Transplantation Research Network in order to gauge public opinion about how and when patients should be informed about organ donation as a possibility.
My aim is to network and give talks and presentations whenever someone learns about my book. I want it to be a tool that people can connect to as a reading aid for experiences and information, and I will combine that with my voice to spread the message that you should tell your family what your wishes are and register on the organ donor register to help save lives. People should feel open to talk about their thoughts on the topic to me at events where I can shed light on what it’s like for a family member waiting for a transplant.
I am working with an organization in India to bring my book in Hindi. In addition I created an online self paced course on Making Magical Memories after experiencing loss and grief for transplant ambassadors in India.
I am also in early talks with some contacts in the UAE Arabic speaking part of the world to bring visibility to my book.
