How a physician with Crohn’s in Ethiopia is helping others with IBD cope

She’s a physician in Ethiopia looking to pave the way for those with IBD. She understands the need because she was diagnosed with Crohn’s in August 2016 at age 22 while she was a fourth-year medical student. After suffering from debilitating symptoms for eight months, she finally received a diagnosis. Dr. Fasika Shimeles Teferra says in her home country and in developing countries, she had always been taught that inflammatory bowel disease was non-existent. She felt isolated and alone as she embarked on her journey with chronic illness. There were no resources. No support. She had no clue where to turn when it came to being understood and knowing how to navigate nutrition.

In her school of medicine, an IBD diagnosis was morbid. She was told if she continued to learn about her illness, she’d die from the stress.

“Despite my medical background, I expected death to be imminent. The breaking point which later turned out to be a turning point for me, was when I was suffering from ovarian cyst torsion, explained Dr. Teferra. “Even though I was in remission at the time, every OBGYN who saw me in the ER refused to operate on me. One doctor refused to operate on me because I’m a “complicated patient with IBD”. He wanted to wait to see if pain meds will help solve it.”

Luckily, one doctor decided to operate on her, but unfortunately, she lost her left fallopian tube and ovary in the process. At age 23, she lost half her chance of being able to conceive a child. Her Crohn’s relapsed a few weeks later and depression set in. (Note: Luckily, she is due with her first child in June!)

“I went to my doctor and told him I was quitting med school (I was 5th year at the time and just starting my medical internship). But what he said changed me forever and made me feel less alone. He told me he was treating multiple IBD cases and that my disease was much more common in Ethiopia than most thought. He also told me Crohn’s was manageable with medication.”

Holding onto new hope

With a renewed sense of hope, Dr. Teferra started advocating for herself and looking for local support groups to connect with others who lived with IBD. The problem—she couldn’t find any! She joined a Facebook group based in the United States and recognized the need for support in Ethiopia.

“I reached out to a couple of gastroenterologists here in Addis and told them I wanted to start a support group in Amharic focusing on sharing experiences, supporting one another. My hope was to help others who were struggling with coping with their diagnosis. I thought sharing my story would make a difference in someone’s life.”

Launching Crohn’s and Colitis Ethiopia to make a difference

After speaking with multiple doctors, Dr. Teferra decided to start an organization that would not only focus on support groups, but also advocacy work for policy makers. The last published data on IBD in Ethiopia dates back to 1990s! She recognized this lapse in research led to major gaps in treatment for IBD patients. This inspired her to launch Crohn’s and Colitis Organization Ethiopia in January 2020. When the COVID-19 pandemic hit in March 2020, it put everything on hold as the world stood at a standstill.

Even though the organization exists, Dr. Teferra is struggling to garner participation in support groups, because sadly the stigma of IBD leaves many in Ethiopia to suffer in silence and shame. She says fellow IBD patients prefer to communicate directly with her, so she has taken it upon herself to meet them and their families to better explain their condition and how to live a full life with it.

“I try and explain to the patient and their family how they can best take care of themselves and how family members can offer compassionate and empathetic support along the way,” said Dr. Teferra. “Many people discontinue their medication the moment they experience a side effect. I’m also passionate about discussing family planning and breastfeeding. Because of my medical background, I am able to give reliable information about IBD and I am able to use my story to guide the narrative.”

Dr. Teferra also has a registered dietitian who serves as a board member for Crohn’s and Colitis Organization Ethiopia. The nutritionist can provide guidance about how to enjoy Ethiopian cuisine and manage diet in the context of cultural foods.

But Dr. Teferra is only one person and can’t address the growing need for support and care. Even though local gastroenterologists have her contact information, and she tries to meet with as many people as possible, as you can imagine, it gets to be a lot.

Bringing IBD to Prime Time in Ethiopia

During an interview about COVID-19 on national television in Ethiopia, Dr. Teferra took it upon herself to also speak about IBD.

“Since it was Primetime, I was able to reach multiple people at once and I was able to send out the message that those with IBD are not alone. I plan to use such platforms to continue to share facts about IBD and that it does exist in Addis. In the meantime, I am working hard to find a researcher who can work on this with us. We cannot challenge policy makers without evidence, and we cannot change the minds of the medical community without research.”

Dr. Teferra says gastroenterologists in Ethiopia can testify that IBD cases are increasing daily. There is lack of medicine, lack of education, and lack of understanding. Many patients struggle to afford medication and choose to discontinue it because of lack of availability.

Overall, Dr. Teferra main mission with Crohn’s and Colitis Organization Ethiopia is to improve the quality of life and health literacy of people living with IBD in Ethiopia and provide the patient community with a better understanding of their condition by empowering them to take charge of their own health.

Connect with Dr. Fasika Shimeles Teferra on Twitter: @DrFasika.

Email: fasikateferramd@gmail.com

IBD mom offers up 5 tips for productively working from home

Twenty years ago, Katy Love, was diagnosed with Crohn’s Disease. She was a sophomore in college. She could barely make it out of bed some days, due to the enormous amount of pain and overwhelming fatigue. After her diagnosis and subsequent surgeries, she wondered if she’d ever be able to have a “real job” – like many of us in the chronic illness community, she worried about how she would be able to work and manage her illness. Katy didn’t allow her diagnosis to prevent her from following her personal or professional dreams. Now as an IBD mom, running her own PR business from home, in the middle of a pandemic, she has some advice to share about being successful in the face of adversity. Boulder_Headshots_043

After graduating from college, I took a job at an interactive advertising agency. My dream job. Then, reality set in. I needed to ask for accommodations for my Crohn’s disease– I had to ask for a flexible schedule – one where I could work from home when needed.

I was elated when the agency agreed. Since then, I’ve been blessed to work with several teams (for other companies) that understood my illness and trusted me to work remotely when needed. As someone who has worked from home quite often during my career, due to a chronic illness, I’ve learned a few helpful best practices that have helped save me time… and my sanity.

Create a realistic routine and office hours. If you know you can’t start working until 9 a.m., due to family obligations, don’t start your work time until 9 a.m. Then, plan accordingly for your end time each day. Be sure to share your office hours with your family and colleagues. It’s important for everyone to know when you’re working. Also be patient with your new schedule. As with all new things, it will take some time to become a true routine. This is all new territory – working from home is a normal occurrence for me, however, having all my children and my spouse at home, while trying to work from home, is a new challenge.

Get Dressed. Every single day. I know this may sound silly, as you haven’t left the house in weeks. But I find this extremely important. It sets the tone for the day. When you look the part, you’re much more likely to feel the part. Plus, with all the Zoom calls, you want to look like you aren’t wearing yesterday’s PJs for the weekly team meeting.

Establish a defined workspace. You need an area where you know – this is my desk, my work zone. Your family members know that when you are there, you are working. Working from bed sounds delightful…I love my bed. However, it’s easy to be distracted if you’re not in a specific workspace. IMG_0846Also, surround your workspace with all that you may need during the day. Computer, chargers, phone, etc. I like to also put candles or fresh flowers near my workspace – they smell great and elevate my mood. With spring finally here, go outside and pick a few flowers and put them in a mason jar. Anything that makes you smile and motivates you.

Communication is KEY. I learned this early on in my career. Just because you’re not in physical sight of your team, and your employer, you want them to know you’re ON and working. The worst thing you can do is go dark. If they don’t see you, hear from you, it’s easy to assume you aren’t taking working from home seriously. So, over-communicate with your team during this time.

Take breaks throughout the day. When you’re setting up your new routine/office hours, schedule breaks into the day. Personally, I like to work out in the mornings. So, finding 30 minutes to hop on my bike sets my day up for success. In the afternoon, take a walk outside, or bake with your kids. Katy_Vince_Family_138It’s extremely important to incorporate self-care into your routine right now. There’s so much uncertainty and doom/gloom in the news. Make sure you are taking time to appreciate yourself, your team, and your family, while keeping your health as a top a priority.