“Using their mind, women can do anything; even sick or disabled. Nothing is impossible. I was told by the charity office people that I could not do this but I never presented myself as a victim. All I show is passion and commitment to my vision.”
Born in Tigray region to a family of ten, Kibra Kebede, a mother of two, is a Parkinson’s awareness advocate, herself a patient struggling with the disorder affecting the central nervous system and impacting mobility.
In her formative years, Kibra and her family moved to many places, including Zalambessa, Debre Birhan, Mekelle and Adigrat. Finalizing high school in Adigrat, Kibra then moved to Debrezeit to attain a diploma in agriculture paving the path for her work in the same field. It is following three years of working in Jimma, that Kibra pursued an undergraduate degree from the former Alemaya University. Kibra also earned an MA degree in Environmental Management from Norway, which after finalizing, she returned to Ethiopia and began to work as a Deputy Project Coordinator with the Relief Society of Tigray (REST).
“People thought it was my sins that resulted in the situation that I was in. I started to believe that I must have been a bad person to be given such a mysterious sickness.”
Her struggle with Parkinson’s began twenty years ago while she was running her own consultancy firm. Feeling pain in different parts of her body, Kibra first dismissed it as stress related due to her workload. But as it got worse over time, she proceeded to visit with neurologists in the country, including trying indigenous and spiritual treatment, with no redress for her ailment. Given that magnetic resonance imaging (MRI) services were not available in Ethiopia at the time, Kibra traveled to Saudi Arabia to get an MRI and a related diagnosis. However, no sound diagnosis emerged from the visit, yet her mobility continued to deteriorate, ultimately impacting her ability to work. Sad and depressed by the outcome of trying to understand her medical condition, Kibra began to stay home.
In 1996 G.C, Kibra traveled to the United States of America (USA) where a movement specialist for the first time identified her condition as Parkinson’s. With this confirmed diagnosis, Kibra remained in the US for six months receiving treatment and slowly gaining mobility. Yet for most of her stay, she recalls how she mourned the loss of her youth and related dreams. But over time, she worked on herself and became grateful that she at least could name what her illness was and could receive treatment for it.
Back from the US, Kibra started a traditional spa (Woyba Tis) business and while this business was flourishing, the fact that Parkinson’s disorder was not getting enough attention and the lack of service for patients without financial means continued to bother her. Kibra visited Black Lion and Zewditu Hospitals and learned that great misconceptions existing among the society, patients and doctors as most thought that Parkinson’s was a disease that affected an older generation. In her own attempt to correct these misconceptions and raise awareness, Kibra closed her business and began to process the formation of an association. Despite the challenges to her own mobility, Kibra formed the Parkinson’s Patients Support Organization (PPSO) in 2011 with two other patients and friends. By the time of its registration PPSO was the second Parkinson’s association in Africa, which has increased to the nominal number of four now. She shares, “I was already on crutches by then but wanted to help those who do not know about this illness and dreamed of providing facilities like ones I saw in US. Visiting Black lion and Zewditu, I was able to meet only 3 patients that made me realize most are hidden at home. By then, there were only two neurologists outside of Addis that were in Nazreth and Bahir Dar. Once we registered, we wanted to promote the mission and vision of PPSO and organized a press briefing but no journalists or media representatives showed up. Thus, we went to Sheger directly. They were shocked to see us and gave us media coverage. We also used Zami radio station and ETV for awareness creation and fund-raising activities.”
“I wanted to help while I was strong enough.\”
PPSO organized outreach programs and kept going to hospitals to register interested patients to become members. Kibra and her colleagues learnt that most Parkinson’s patients were poor, unemployed, afraid to come out as they think their sickness was contagious. They also had shortage of food, medicine and clothes. PPSO initially worked only in Addis Ababa and began its operations with only 3 members and grew its membership based to more than 500 currently.To address the gaps in understanding, they designed a program where patients, their families, doctors and the media access information and trainings. Creating partnerships with “Bread for the World” they made basic financial support and access to medicine available.
\”PPSO started the work of raising awareness on Parkinson’s from zero. People used to ask if it was a spare part.\”
Today, PPSO has a membership base comprising patients over the age of 60 as well as members as young as 27. It fundraises locally and internationally to provide basic support to members in the provision of medicine, sanitary items, clothes and financial support. The provision of wheelchairs is also made available to support those who are able to work start small entrepreneurial endeavors. A nurse/social worker has also been made available to members, to go house to house in support of patient’s needs, including speech therapy where required. PPSO also provides trainings and disseminates information through print media as well as through media personalities like Haregewoin Assefa to promote its work as an Ambassador for the cause. One of PPSO’s greatest victories, however, has been ensuring that pain killer medication used to treat the pain of Parkinson’s is imported to the country with regular provision, despite the previous irregularities.
Speaking to the challenges of care for many with Parkinson’s, Kibra shares, “Parkinson’s disrupts families. I remember a 27-year-old bed ridden orphan patient who was being looked after by her daily laborer brother but who had to wait on bed all day to get food and whose diaper was changed once every 10 days. For this, increasing people’s awareness is important to make patients and families’ lives better. To help the process and increase accessibility of information, I wrote seven books, several leaflets and brochures and also translated a book written on Parkinson’s to Amharic.”
Kibra’s passion in life is doing something that benefits others and she wishes to see an Ethiopia where Parkinson’s patients access better social and medical care, have enough food and mobility devices and a better life at large. She wishes PPSO to expand to the regions and also envisions opening a center for abandoned patients and those with no family, where patients can live a better quality and dignified life.
While Kibra’s health has deteriorated as of late and she is not as mobile as she used to be, PPSO has hired a Director to oversee the operations of the association. However, Kibra continues to serve as a consultant, dedicated enough to come every morning to push the organization to actively engage. She still writes and translates and she is thriving to open a center which is her goal.
\”My last statement to everyone is to help whoever is around their community and to share the world.\”
Testimonials
“She is the light of hope for everyone around especially to member patients. She thought beyond self. She has made us all realize our potentials even being in difficult circumstances.” It has been 200 years since Parkinson’s was discovered but Kibra introduced Parkinson’s in Ethiopia. She has created awareness and a movement among all involved especially the government and the media which is combating the related misconception and discrimination. Thanks to Kibra, her family and the staff efforts, patients can be in public.” ~ Ato. Talimos Data (Current Director of PPSO)
“Kibra gave herself and collected us. She is our hope and model. She deserves recognition because she is a person who never gives up and don’t use excuses. She is a very committed person” ~ Ato Wondirad and Wro Alemitu (Beneficiaries of PPSO)
“For me, she is the strongest person in the world. Almost everyone with the disorder did not understand their sickness. She is the one who challenged the culture and defied the sayings around the disease so that people can understand what they have and adjust the changes in lifestyle. I remember a man who was an ex-boxer for Ethiopian Youth Federation but was forgotten after he developed Parkinson’s. He has no one to take him to the sunlight or give him food. PPSO lifted his life till the day he died and he was very happy. Parkinson is the most difficult disease anyone can get. If a woman with this disease can do what my mom is doing, there is no more excellence than this.” ~ Lea Mehari (Kibra’s daughter)
