2014 I did an interview with a Kidney Disease and Transplantation advocate on my online platform ” A Sister in Germany”. March is Kidney month, so I decided to revisit that interview and share. Iya Bekondo learned the blessing in receiving and made it her motto to give. Iya received the gift of a second chance to life through a kidney transplant, without which I might never have had the chance to meet this ever smiling woman with a very warm heart. She started a foundation to create awareness on chronic renal disease and kidney transplantation as well as to raise funds to support other patients. When I met Iya, I was so fascinated by her spirits, mind and style. I thought my readers need to hear her story although she is not in or from Germany. Her story is worth telling across borders. And in celebrating her…we celebrate two women….Read through to find out.
a Sister in Germany: Thanks for taking this time to reach out to our readers. I’ll prefer you introduce yourself to our readers
Iya Bekondo: Thank you very much for having me Dr SEA. Well, I am Iya Bekondo, renal transplant recipient, and founder of The Iya Foundation, Inc. I was born and raised in Cameroon; but I currently reside in the U.S.
a Sister in Germany: How long have you lived in the US?
Iya Bekondo:I have been in the U.S for almost 14 years
a Sister in Germany: Tell us about the Iya Project.When was it founded and what exactly does it do?
Iya Bekondo: The Iya Project was founded in 2010 but officially registered with the IRS as a non-profit organization on August 14, 2013.
a Sister in Germany: Congrats
Iya Bekondo:: Thanks. The Iya Project was started under The Iya Foundation, Inc. It is a project founded to educate and raise awareness on chronic kidney disease; especially in the African immigrant community as well as to raise funds to assist low income uninsured end -stage renal disease patients. The Iya Project also aims to reach out to underdeveloped countries; with the help of partners and funding from both private and public sectors. It is the hope that this initiative will provide resources that will improve dialysis treatments in those areas; thereby reduce the mortality rate of those suffering from ESRD.
a Sister in Germany:Your personal story was the driving force to start the Iya Project. You too benefitted from a donor, who is your mum. Do you mind to tell our readers your story?
Iya Bekondo:Absolutely…at a tender age of 7 ,while still in Cameroon, my mom, a practicing nurse at the time discovered that I would have edema in my legs and abdomen, as well as puffiness in my face when I would wake up in the morning. With her medical background, she sensed something was wrong, and brought home some urine deepsticks. The following day she tested my urine, and realized that I tested positive for protein in my urine. That was when the hospital visits started. To make a long story short, I was diagnosed with nephritic syndrome and had to continue seeing a nephrologist every 3 months. Mind you, the closest nephrologist; and possibly the only one in Cameroon at that time was like 8hours drive away from where we lived. This continued for the next ten years, as I tried to manage my health and prolong the functioning of my kidneys. It wasn’t until early 2000 when my health deteriorated rapidly and my symptoms became more provident. Seeing the horrible shape I was in, my sister who was also a practicing nurse in the U.S decided along with my mom that it would be best for me to re-locate to the U.S; that way I could benefit from the more advanced treatments available to chronic kidney disease patients. Shortly after my arrival to the U.S in august of 2000, I was diagnosed with complete renal failure, and had to start dialysis treatments immediately. I did peritoneal dialysis (the home dialysis) for almost 2 years and then hemodialysis (the in-clinic dialysis) for about 3+ years, before my transplant in August of 2005.My God sent mother was my donor.
a Sister in Germany: All of that must have been very tough for you as a child
Iya Bekondo:Dealing with kidney disease; especially at a very young age was already difficult; but having to do so while uninsured; with all the medical care needed to sustain life was very hard. But I have to say by the grace of God who put the right people in my path, and the love, generosity, and support from my community in the U.S, and most importantly my family, life was a bit easier to deal with.
Iya Bekondo:Despite my health, I always knew education was a priority; hence I enrolled in college -Middlesex County College. While in college, I joined the AmeriCorps (a volunteer/work-study program) where I volunteered at a single mothers housing community – tutoring their children; and Elijah’s promise (a soup kitchen for the homeless) where I helped serve food to the homeless within my community. With my health deteriorating, I had to skip a semester at school and was also unable to fulfill my commitments to AmeriCorps. Noticing my absence, the staff and fellow AmeriCorps members out of concern reached out to me. I could honestly say this was the conception of The Iya Project. I can to this day remember that initial visit that took place in our apartment. After hearing my story of how sick I was and in need of a kidney (which my family was willing to donate; but the lack of finances restricted us from carrying on with the transplant); they immediately committed themselves to help me raise the money needed for the transplant to take place. This was the birth of the original Iya Project. So my fellow AmeriCorps members got together and organized several fundraising events like music concerts, golf tournaments, serve-a-tons, etc just to help support me. The Iya Project, created for my benefit, raised almost $40K.
After experiencing such love, support, and generosity, from my community, I knew no amount of thank you(s) would be sufficient to express my gratitude other than paying it forward. With a burning desire to give back, a passion to save lives and a determination to give others second chances like I received, I had to find ways to help others who may find themselves in a similar situation. Until this day, I forever remain indebted to those members of AmeriCorps and the First Presbyterian Church for their collaboration in raising all the funds needed for me to get my life-saving transplant. I am very grateful to God that my mom was a perfect match. On August 21, 2005, I got my transplant, which led to an improved quality of life for me and my family. I am thankful and grateful to God for allowing me a second lease on life. My mom; God Bless her; gave birth to me twice. I thank God for giving me my mom. And I can tell you; I have the very best mom in the whole entire world (didn’t that just sound like a 5yr old lol…well that’s how I feel lol).
With the success I experienced with the Iya Project, the aim is now to grant other patients in a similar situation a second lease on life and so an improved quality of life.
a Sister in Germany: It is most naturally expected that every child shares a special bond with his or her mum. In your case, did this bond increase or would you say that changed after she gave you one of her kidneys?
Iya Bekondo:Being sick at such a young age made the bond with my mom a lot stronger because she was my sole caretaker and my source of courage, strength, and comfort. I was her ‘handbag”. Her presence always seemed to make my pain go away. As I grew older, she became my best friend, my confidant, my fair lady (as I love to refer to her), and stayed a loving mother. Having my transplant has given me an improved quality of life and I have been able to be more adventurous (trying to make up; being the late bloomer that I am, lol). I think my mom has had a little bit of a difficulty letting go of the leash lol…let’s just say, there’s a lot of makeup hugs and kisses with love always being the main ingredient. I really don’t think of it being any other way. I am proud of my mom for never giving up on me or succumbing to anything else but the medical diagnosis; and pursing solutions accordingly. She’s a strong and brave lady.
a Sister in Germany: What were your fears when you were told the diagnosis and that you needed a transplant?
Iya Bekondo: Being young and ignorant at that time, I’d have to say I didn’t know the intensity of end stage renal disease until after I started dialysis. Hence, when I was diagnosed, I was glad because I knew we had an answer to what was really wrong with me and that there was a solution. And then came dialysis; peritoneal dialysis was ok but hemo was pure torture (for lack of a better word). But I am thankful there are replacement therapies for renal patients like myself to sustain us and keep us alive. However, I have to say, being a teenager; I cared about others’ perception of me especially as dialysis took a toll on me physically. I was a teenager at that time and I cared a lot about my looks. Even though I have to give all credit to my family for making me feel like a million bucks, telling me how I looked like a model, even when I couldn’t relate to that when I looked myself in the mirror. But yea, I feared not being able to belong, and not being able to do the things teenage girls loved doing…note I never feared losing my life. Considering the severity of my health, I give props to my mom and medical team for the continued support, encouragement, and instilled hope.
After my mom was approved to be my donor, most of my fears were related to her well-being – what would be the effect of the surgery on her? What if my body rejected the kidney, would I have just wasted her kidney? Till this day, there’s still that under lying fear and anxiety that never goes away.
Iya and her “fair lady” , her mum. The two women and a set of kidneys we celebrate this month of march!
a Sister in Germany: Who was the first person you told and did you tell any other persons outside your family?
Iya Bekondo:I was diagnosed with chronic kidney disease at age 7. It was managed for almost 10 years before I lost complete functioning of my kidneys and had to go on dialysis. Being diagnosed at such a young age, it was pretty much my mom. She’s been the one I run to for it all. My health was not something I spoke about with my friends because at that point, my symptoms were very minimal. But I have to say, from the little town of Limbe where I was born and raised, almost everyone knew about it most likely through my mom. However, as I grew older, there are some very few friends I have been able to confide in; the ones who have shown concern for the most part. For the day to day struggle with living with renal disease (especially at this point in my life); God and my very immediate family have been my outlet and my strength; and with that; I have remained somewhat reserved and kept to myself for the most part. However, The Iya Project has given me a platform to be out there and outspoken about this silent killer called chronic renal disease. I stand very tall and strong when I talk about it; and I strongly believe that early detection of renal disease (as with most diseases); will not only delay or even prevent renal failure but will also save lives. I am very glad that “a Sister in Germany” is being a part of this education and awareness of kidney disease. Thank you.
a Sister in Germany: We are humbled by you. What was the reaction? Did you encounter a lot of ignorance in your committee on the subject?
my sister, Lucy and I with the very fun loving and hospitable Iya in New Jersey 2010…
Iya Bekondo:Absolutely! Plenty of it…but I have to say, it was more so after I made The Iya Project public. Some family members thought going public with my health history may scare potential husbands away, and advised that I wait until marriage before going public -I still wondered how possible that could be being that I usually share my story in only a couple of dates, and I feel proud and grateful and want to share my testimony with the world- Some assume I may not be able to have kids. Back then, others thought I was too young to be going through such an illness supposedly meant for elderly people. Others thought I was probably being be-witched. I simply laugh and educate when approached. And I do my best to educate and create awareness on kidney disease privately and publicly.
a Sister in Germany: What about stigmatization. Is that a topic in your case and others who share a similar fate? Do people treat you differently when they know your story?
Iya Bekondo:Yes. They automatically feel like they must shower you with pity. They consider you fragile. They label you as one with a shelf life. Seems like they don’t see you as a full human anymore…they assume so much about your personal life and socio-economic life. The mentality and reaction of people being ignorant about the disease as stated earlier also applies here and so further increases their stigmatization.
In reference to if others in similar situations share similar fate; I can say yes; as through support groups, I have come to understand that other patients have had similar stigmatization experiences. For example; the big thing now, is the complaint of one (the patient) being moody and sometimes difficult to deal with. This is something that we’ve talked about in some of the support groups I belong to. And yes ESRD patients tend to go through a lot of mood swings and do suffer from psychological effects. It’s only realistic that they could be difficult. This is something I had to learn about myself especially after more than a couple of people expressed concern about my moodiness. I actually did my research and have written an article that will soon be published on our website in an effort to educate individuals such as family members and coworkers who are in frequent contact with love ones suffering from chronic kidney disease so they have a better understanding of how to deal and interact with them. One of the side effects of the medications we take is mood swings in patients. The anxiety of dealing with the disease for one reason or another (such as paying for medications, always on a diet, the frequent hospital visits etc) can be overwhelming and also cause psychological effects. The bottom line is people who love you, will take you for who you are, and love you all the same. The best we can do as an organization, is educate others not only about the disease, and prevention through early detection, but also to give them an understanding of how to deal with people in their lives who are already suffering from renal disease. The Iya Project through its RenalNews blog page (found on the website) will send out monthly articles that will educate and inform the world of issues surrounding chronic kidney disease. Articles such as the one on mood swings will be posted on the blog.
a Sister in Germany: I must say I have utmost respect and admiration for you telling your story to raise awareness in our community on a subject rarely touched, even by medical practitioners. Please tell us how best we can support you to reach your goals Iya.
Iya Bekondo:Yes. We embarked last holiday season on our first blanket drive where we collected blankets for our in-clinic (hemo) dialysis patients. Hemo dialysis is usually a rigorous 3-4 hour treatment, where the patient is connected to a dialysis machine and treatment is being performed. The environment where the treatment is being performed is usually cold especially for the good maintenance of the machines. Donating a blanket to an ESRD patient on dialysis does not only create warmth in the environment but also brings warmth in their hearts as they experience the love from the world through this very difficult time (many patients on dialysis suffer from emotional distress and psychological disorders). Hence, supporting us by donating $10 will put a smile on an ESRD patient on dialysis. You can go to www.theiyaproject.org and hit on the donate button to support us.
Also, we do have our TIP-Financial assistant program coming up, where qualified individuals will be able to apply for financial assistance. Hence, we are accepting financial donations that will continue to enable us provide this financial aid. This can also be done through our website at www.theiyaproject.org. For more information, please contact us through our website at www.theiyaproject.org/contact
a Sister in Germany: I believe if there is any project in our community I have to endorse , it will be yours because you are indirectly giving a second chance to life to our people. Thanks for doing what you do and for telling us your story.
Thank you very much Dr. SEA and a Sister in Germany.
We greatly appreciate people like you, and the work you do through a Sister in Germany, as you are part of this movement of creating awareness and educating the world about chronic kidney disease. Thank you for being a part of and promoting The Iya Project.