Odep - Growing up with HIV in Kenya

My name is Odep. I am a heartfelt individual with a keen desire to help others. My desire and passion lies with children and adolescents who have experienced hardship throughout their lives. As an individual born with HIV, who has lost many loved ones and experienced firsthand living on the streets of Eldoret, Kenya, I feel a distinct connection with what many children and adolescents are going through. I have positioned myself within the Eldoret community as a spokesperson for young adolescents living with HIV and advocate for the health and well-being of street children. I love sharing my story to anyone, anyplace, and anytime.

Currently, I am working as a volunteer peer navigator with the AMPATH-Kenya prevention department. My volunteer experiences consist of me visiting various institutions; prisons, schools, companies and streets (road shows), to share my personal story and advocate on HIV/AIDS in my hometown. Through my work as a volunteer, I have noticed a positive change in the mindset and attitude of people regarding HIV and I am very grateful and humbled that I've been fortunate enough to contribute to this.

In my mentorship work with the street children of Eldoret, I share my personal story of what it was like living on the streets as an adolescent. Personally, I feel that by sharing my story with these children they will be inspired to have more hope in their lives and try to live healthier lifestyles.

In addition to peer mentorship, I also coach the street children football club called SC FC. I am proud to say that we have participated in a numerous tournaments and finished particularly well in each of them. Not only has the team performed well, focusing on the essential tenets of teamwork and goal attainment, but also they have had so much fun competing together and this fills them with hope and laughter. It is great to see children who have experienced so much hardship enjoy themselves. This inspires me to try and give more children similar opportunities. I first handedly know what it's like to be in their position, and I want to provide something positive for them.

Many of my peers look to my fun and outgoing personality for cheering up. Through my rapping and comedic alter-ego, named Fat Prince, I perform artistic and comedic expressive words of encouragement to my peers. Fat Prince represents an outgoing adolescent in western Kenya who brings light to social issues found in our society with a comedic twist. I have found my performances as Fat Prince not only bring laughter to the group of my peers, but also instill hope through my encouragement to stay healthy, despite various social and medical challenges that we all face.

I hope that my combined efforts, as a peer mentor with AMPATH and my experience working with the street children of Eldoret, will one day break the stigma barriers and hardship associated with poverty and HIV for children and youth living in Eldoret. It is my goal to bring together my town of Eldoret and build a welcoming and understanding community. My experiences with conquering my own hardships and coming to accept my HIV status have shaped me into the young man I am today. I am proud of who I am and of what I have overcome. It is my dream to be a role model for those living with HIV and those living on the streets and provide a beacon of hope signifying that they too, can live healthy and fulfilling lives.

My future plans are to attend college and study clinical psychology or a related discipline. This education will give me the necessary knowledge to fulfill my dream of contributing to the betterment of the community that I grew up in.  I plan to do so by continuing to establish relationships with the street children of Eldoret and set an example of what they can achieve. It is my hope that I can encourage the children to pursue education and be successful and contributing persons in our community.

Odep blog

Kenyan school children.

 

 

Posted at 03:58

Mary* - Living in Kenya with diabetes

At age 3, I was admitted to the local hospital and after staying for almost a month without anybody having any idea of why I was having problems, someone finally requested a glucose test and I was diagnosed with diabetes. To many people this was strange. In the village I come from, people thought diabetes was a disease for the elderly.  Some people also said those with diabetes do not live long-I even remember someone telling me that I wouldn't live to see my 18th birthday.

Every morning I would cry because of the insulin shots I got from my parents as part of my daily routine.  I frequently tried to run away because of the needles and pain of these injections (thin insulin needles weren't available at the time).  Little did I know that I needed these insulin injections in order to live.

Growing up with diabetes was not easy- taking insulin every morning, eating a different diet from my siblings, and having everyone look down at me and referring to me as a sick one. All these brought sorrow to me. Sometimes I would ask my parents "why me?"  "When will I get well?"  

My school life started well, but it did not continue well because of the many challenges diabetes brought. I had stunted growth and a big belly. My classmates would laugh and make fun of me, largely because I could not explain why I was so different.  I never really understood what I was ailing from; all I knew was that I was sick.

At the age of 10, my dad was advised to take me to Moi Teaching and Referral Hospital to attend the educational clinics. It was there that I met a nurse named Jane Gitahi (Diabetic Educator) who taught me about the disease and the many unanswered questions I've had over the years. She educated me and the other patients on what diabetes does to your body, how to manage it, how to store and administer insulin, and the appropriate diet to follow. We booked for the next clinic visit, but I went home and immediately started applying the strategies she had taught me.  My parents started doing everything that we had been taught, and in the next clinic visit I looked much better. Jane never stopped caring for me and consistently took her time to educate me and made sure I learned more about diabetes. She advised my parents to get me a glucometer so that I could do my blood sugars at home. MTRH also hired peer diabetes educators who advised me to attend trainings on diabetes and follow all the steps needed to improve my diabetes. These trainings really helped me and after completing them I became very comfortable with taking care of myself away from home and from my parents.

The time came for me to join high school and I was eager to go to boarding school where I knew I would get a better education.  My parents were very hesitant to allow me to leave home but eventually allowed me to go after seeing how far I had come in managing my own diabetes.  I did not have many problems because I had learned about diabetes and how to manage it. I was getting insulin from the hospital every time I went for checkups and I never missed insulin. I successfully completed high school and was able to gain admission to university.

I faced several challenges during my university training. Sometimes lectures could come at a time when I needed to eat or I needed to take my insulin.  I also had trouble eating with the stress of school and therefore I had problems managing my diabetes; but quickly realized my eating habits were prevented me from getting my blood sugars under control. 

The medical care that I was getting from the personnel at Moi Teaching and Referral Hospital and the many partners that supported this clinic gave me hope of living my life with diabetes. After benefitting from this clinic, I was excited about the opportunity to join this team and help other patients the way they helped me. I worked in the home glucose monitoring program for 2 years and after my graduation I got another job with the AMPATH-Kenya Program to serve as their lead Business Manager and coordinate their many projects including diabetes related programs. Through my employment with Moi Teaching and Referral Hospital, I have also been able to see how the Lilly insulin product donation has improved my life and the hundreds of other patients who are now able to better control their diabetes. 

* Though Mary's name is a psuedonym, her story is real.

Carin

Posted at 03:11

Sonak Pastakia - What Lilly means to us

As I was walking through the new Chandaria Cancer and Chronic Diseases Centre at Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya, I was reminded of the early days of diabetes mellitus (DM) care in western Kenya.

When I first arrived here almost a decade ago, a diagnosis of Type 1 DM was essentially a death sentence.  With ~ 75% of the population in Sub-Saharan Africa not having access to reliable stocks of insulin, many patients faced an especially harrowing situation. This is further compounded by the lack of access to even basic monitoring supplies. Patients previously relied on facilities like MTRH to provide all diabetes monitoring during their irregular visits to the facility every 3-6 months. This visit typically included only a point-of-care random blood sugar whenever the frequently stocked out strips were available, which forced providers to make the vast majority of decisions based on nothing more than a series of educated guesses.

This unfortunate reality for diabetes patients has been completely reversed through the efforts of the Lilly-AMPATH partnership. We now are able to provide early detection through home-based screening which prevents the many complications seen with the late stage diagnosis. In addition, we have also created one of the largest home glucose monitoring programs in the Sub-Saharan Africa public sector with over 800 patients enrolled in this highly impactful service.           

However, one of the biggest developments in improving care and outcomes has been the continual supply of insulin through the life-saving product support from Lilly. This partnership has been able to transform the <25% availability of insulin seen in most Sub-Saharan African settings to ~98% at MTRH.  Lilly's support has helped improve thousands of lives throughout western Kenya as they now have the confidence that insulin supplies will be available to help them avoid life threatening complications they would inevitably face in the absence of insulin.  As we continue to distribute Lilly insulin to patients, we are consistently reminded of how Lilly's singular act of kindness donating insulin to our program has spawned the creation of all the advancements in diabetes we have seen throughout western Kenya.

Sonak Pastakia, PharmD, MPH, BCPS
Associate Professor, Purdue University College of Pharmacy

What Lilly means to us

Posted at 06:35

Ken Cornetta – Chili Lemon Potato Chips

It is Saturday lunchtime. The African sun is spectacularly bright, the sky a calming blue, and the temperature a perfect 70. I've just returned from a walk in downtown Eldoret. I've got my weeks supply of "Chili Lemon" potato chips and cookies. I'll know in an hour or two if I'll pay the price for not putting on sunscreen.

While the IU House is quiet right now, it has been a hectic week with a visit from the Dean of the IU Medical School, the head of the IU Simon Cancer Center, and the chairs of Medicine and Surgery. This week also heralded the return of the IU medical students! Everyone here is excited to have them back.

I'm here working with the Palliative Care team and we had the opportunity to attend the Multi-disciplinary Cancer Management Course sponsored by AMPATH and the American Society of Clinical Oncology. The three-day course focused on proper management of various cancers. I was excited to see the inclusion of palliative care in the curriculum and encouraged when the majority of attendees signed up for a breakout session on the topic. In fact they had to add a second session to accommodate everyone! I was honored to co-chair the session with Dr. Esther Muinga from the Kenyan Hospice and Palliative Care Association. There was a fascinating discussion on the challenges of communicating recommendations for supportive care and hospice. There are clearly distinct cultural differences around end of life, many of which I am just now starting to understand. Nevertheless, there are many shared challenges as we in medicine try to assure patients that our focus is always about them and not just the disease. We may not always be able to offer chemotherapy, but we can always provide care to the person.

Every time I visit Eldoret my perspective matures, and it aged significantly this week. Earlier in the week the team met to discuss a potential research project aimed at providing hospice support to cancer patients. Later in the week we met to see if their work manning a 24-hour hotline for cancer patients should be published in the medical literature. They wanted others to learn from their experience. The next evening I had dinner with one of the young hematologists. He was explaining some of the progress he has had with acute leukemia patients, patients they were not even offered therapy a year ago. He was clearly excited about his results, but most amazingly he was thinking about how he could develop a research protocol to improve care. As I began processing these discussions, I realized how truly impactful AMPATH has been. They have developed a unique environment where the Kenyan partners are not just delivering care. They are embracing the academic model to develop clinical excellence and promote advances. The challenges here are daunting but the chance to work with my Kenyan colleagues who are so dedicated to improving the lives of their countrymen is truly inspiring. I am humbled by their dedication and honored to contribute what I can.

Ken Cornetta, MD
Director, Inpatient Palliative Care
IU Health Bloomington Hospital
Professor of Medical and Molecular Genetics
IU School of Medicine

Posted at 06:27

Julie Thorne – Eldoret, Kenya: Take 2

My three weeks in Eldoret were packed with interesting research, new learning opportunities, conversations, new and old friends, good food, and a bit of travel. My main project involved piloting a retrospecitve chart review at the Riley Mother and Baby Hospital at Moi Teaching and Referral Hospital to measure the pre-eclampsia disease burden and the associated maternal and neonatal outcomes. I hope you read my complete blog here.

Juile Thorne, MD
MPH Candidate 2015
Harvard School of Public Health
Postgraduate year 4
Obstetrics and Gynaecology, University of Toronto Faculty of Medicine

Riley Mother and Baby Hospital, Eldoret, Kenya

Riley Mother and Baby Hospital

Posted at 06:18

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