BY ELIZABETH MENGISTU
Life is full of ups and downs; and all of us, at least once in our lives go through turbulent times. On such challenging situations, most of us discouraged in life; feel like broken and put ourselves in the state of despair as if our world is falling apart.
However, some people even though the challenges are draining and the burdens they may shoulder are backbreaking; they would stand with endurance as if nothing has happened. Surprisingly, building reseliance and going beyond, they try to reach out to others- not to let others undergo what they have gone through; and do whatever they can to support others.
Kibra Kebede is one of those people who are sacrificing their time, energy and money to help others. Even if she was diagnosed as a Parkinson patient in 2000- a disease caused by a loss of certain nerve cells (neurons) in the brain, which leads to the point where the patients face difficulty to walking and talking- bearing her sufferings and pains, she has become a blessing for many people.
Without worrying about her own sickness, she has founded an association, “Parkinson’s Patients Support Organization-Ethiopia” on her own initiative, hoping the better for for other patients.
Recently, Kibra has been recognized with the ‘2022 BEGO SEW AWARD”, for her contribution in establishing Parkinson Patients organization, making the public aware of the disease, creating supportive environment to patients and helping them to endure the difficult times in their lives.
Following the Award, Kibra posted in her social media page: “For my friends those who can not read Amharic, I have become a winner of a Kind Person Prize of the year 2015 Ethiopian calander, organized by BEGO SEW PRIZE. I got the prize for my work on establishing Parkinson Patients Support Organization -Ethiopia and all rounded help for Parkinson Patents.”
Kibra was born in a village called Aditenan, in Gulomukada Woreda, Tigray State. As she stated, she was one of the outstanding students in her primary and secondary education. However, the result she scored in the National Exam (grade 12 final exams) was only for diploma program. Thus, joining Debre Zeit Agricultural College, she earned her Diploma in crop science with distinction. It was then she started her career as a junior agriculturalist in a district called Dedo in the former Jimma district.
After serving there for three years, she joined Haramaya University; former ‘Alemaya College of Agriculture’ to further her education thereby to realize her dream.
After graduation, she started working in an office called ‘Development Projects Research Authority’. And after working for three years, she travelled to Norway to study her second degree; and graduated in the field of “Management of Natural Resources.”
“As I returned from Norway, I started working at a humanitarian organization known as “Mahbere Redeit Tigray” for three years. Then, I resigned at my own request and started working as an independent consultant.”
It was at this time that she started feeling unwell. After working as a consultant for about a year, she began to feel some illness on her leg. However, because she was extremely busy, she did not give any attention to the pain.
“When the illness started me, only one of my legs was aching me severly. When I wanted to walk, my toes, especially the big one, were bothering me. The worst, because I was driving, and rarely walk, I failed to notice the severity of the sickness,” she said trying to remeber the situation.
Six months after she felt the sickness, an incident that enabled her understand about the seriousness of the aliment was created. At that time, when she tried to walk, she encountered difficulty in lifting her legs. Even she struggled to take some rest and reach to the place she had planned, it was impossible. Then, quitting the walking event she returned to her house.
“The pain I felt at the time was so terrible; and l realized that I was in a worse health problem. The pain that was only on one of my legs spread to the other one. Not only had my toes, but the muscles below my knees, started hurting me badly,” she added.
Even though she was hoping to get better from time to time, it became worse and worse. Then, she decided to visit a doctor and went to nearby clinic. Sadly enough, the sickness which is almost unknown, became unclear even to medical professionals. Other than prescribing painkillers and advising her to take physiotherapy thinking that it is minor, they could not diagnose the case and help her.
As Kibra stated, she visited almost all hospitals and renowned physicians, especially neurologists, in Addis Ababa to get treatments. However, all was in vain. None of them could identify the disease from its signs and symptoms. Even traditional medicines could not help her.
Kibra, who was tired of the local treatments, turned her face to foreign countries. Discussing with her families, she traveled to Jeddah, Saudi Arabia.
The treatments she received there was not different from the local ones. Though she was examined by state of the art medical equipment, including MRI, they could not identify the disease and name it; other than prescribing uninterrupted medicines saying that it might be “muscle problems”.
Unfortunately, the medicine could not help her because the problem was not muscle. Seeing no improvements, she quitted taking the muscle medicine they had prescribed for her.
“The pain gets worse day by day, and I started facing trouble in keeping my balance. Aside from the pain, not knowing what to eat and what to avoid and what things I should do to lessen the pain, terrfied me a lot and made me even more worried.”
After spending two years with an endless pains and depressions, she got a visa that enbled her follow her medications in the United States. It was there she understood that the case of her illness was Parkinson.
“My years of anxiety, worry and inconvenience were resolved and became the end of the first,” she said.
“When I panicked thinking that Parkinson’s was an unknown incurable disease that has happened only to me, the doctors assured me that it happens to many people indiscriminately. However, I was arguing with myself because my heart could not believe this fact; and thinking that if there are so many Parkinson patients; how I failed even to hear about it.
After I took the first capsule, I got up and started moving. The joy I felt at that moment was unbelievable. I felt better with the first capsule,” she said.
Kibra learnt from the physicians that the disease is being incurable, and the medicine that she is taking would only give her relief for the time being; and become ineffective in course of time. Further, she read a lot about Parkinson disease from the internet. She also understood as her dream cannot be realized due to the sickness.
Given that there is nothing she can reverse, she accepted the reality and decided to go beyond herself- to live to others as much as possible. After she left the hospital, she decided to support her fellow citizens, who are suffering from this rare disease.
As first instance, she contacted all the organizations she thought them to have understanding about the illness. However, what she found out was that they all had no information about Parkinson.
“After I understood about my illness, I started thinking about other patients. I went to several institutions assuming that I should do something, but most of them did nothing because they did not have the information. Even those who had little information thought that the disease was a white man’s disease.
I also understand that there are a few patients in Addis Ababa, received treatments as if it is neurological problems. Then I discussed the idea of forming an association with my family,” Kibra said.
Then, Kibra established Parkinson Patients Support Organization-Ethiopia in May 2011- the first organization of its kind in Ethiopia dedicated to raise awareness and supporting Parkinson patients in Ethiopia.
Currently, the Organization is performing various awareness raising activities. By engaging in capacity building, it will train Parkinson’s patients and provide various trainings to nurses and general practitioners, health extension workers, and journalists working on health.
With its limited capacity, the organization is also providing support and care activities to patients. Patients receive medication support; clothing and food donations.
Kibra, who spent a few successful years before she was diagnosed with Parkinson, received certificates and awards from various countries in various professions? She also received many acknowledgments; including the 2018 Association of Women in Boldness (AWiB) annual Women of Excellence award outstanding female leaders, for the price she paid.
“No one should experience the pain that has happened to me. It should not happen to my people, especially Parkinson patients,” she always says.
Thinking that it will give some insights to readers, especially for patients, caregivers, and doctors, she published a book about Parkinson disease; translating Abrham Leberman book.
She also published her second book that narrates the establishement of her organization and her life experience, starting from her earily life upto now.
The Ethiopian Herald September 29/2022
