Rabiya Taok, Alpha-1 Leader In Action: Determined and Optimistic
Prior to her sudden change in health, Rabiya (42) who lives in Lebanon, described her life as a daily adventure. She was an energetic drama therapy teacher, advertiser, creative copywriter and an outdoor sports lover of all kinds. Her days and her evenings were full of life celebrations with family, friends and new people.
Since being diagnosed with Alpha-1, all of this has dramatically changed. Rabiya lost the ability to go to work because of limited body strength and is no longer able to stand all day during the demanding theater rehearsals and the requirements of a physically active drama therapy job. Additionally, she lost a job with an advertising agency because of her declining health and weekly demands of augmentation therapy at the hospital.
“It took two long years to be diagnosed with COPD. I saw ten doctors, many of whom tried to convince me that my illness was psychological, not physical; despite the poor lung capacity I showed after each lung function test”, Rabiya recalls. “But despite the heaviness of accepting the diagnosis, I’m relieved to know what is wrong with this body of mine. It’s not my mind or my emotions that are sick; it’s my lungs.”
Once properly diagnosed, she started researching Alpha-1 and treatments only to find out that it was nearly impossible to receive augmentation therapy in Lebanon; one of the smallest countries in the world. Because no official regulations existed! She discovered that the required procedures to purchase the protease inhibitor were the same as those for receiving an organ transplantation.
Being the only Alpha-1 patient in Lebanon since her diagnosis in October of 2013, Rabiya quickly came to the realization that the real fight had only just begun.
“I kept knocking on hospital doors, one after another, and was refused because I was a dead end case to them. Yet, I didn’t give up. After sending dozens of letters and making many more phone calls to every part of the globe where augmentation therapy is available, I finally found my “angel” physician who courageously agreed to have me as a patient, and whom I’m so very grateful for his positive response and acceptance.”
Staying alive is Rabiya’s immediate goal. “My current FEV is at 29% which is of great concern to me and hinders much of my day to day living. Transplantation is not even an option in my country and the decision to go abroad and find a list where I could qualify for a lung transplant seems impossible for the moment.”
Rabiya experienced a year-long battle before she was able to receive the proper Alpha-1 therapy from the medical authorities in her country; this journey has inspired her to become an Alpha-1 advocate.
“Over the last few years, I have created awareness among a majority of Lebanese physicians and have gone back to doctors who originally misdiagnosed me, so future patients can be helped more quickly. I took it upon myself to become known throughout the Ministry of Public Health, as well as in the Lebanese Doctor’s Order and the Lebanese Pulmonary Society. Now they know me and they know about Alpha-1.”
As for the latest good news: now an Alpha-1 blood test is available for the first time in Lebanon, thanks to my physician Dr. Dany Abou Abdallah and the hospital where he practices – Dr Serhal Hospital. This is the message that Rabiya is happy to have delivered and she is hopeful they will now conduct an Alpha-1 test when they have a suspicion.
With the support of Alpha-1 Global, Rabiya has joined hands with those who have started the process of understanding Alpha-1. Bridging affected individuals with medical and research bodies around the globe and creating not only awareness, but support for those newly diagnosed; this helps them make the most informed choices regarding their personal condition.
“Even if I’m the only diagnosed Alpha-1 patient in Lebanon, I shall keep looking for ways to engage people with any unknown or rare disease in order to help create more positive social opinions toward individuals who are considered non-functioning. In the Middle East, once you become sick, you are automatically sidelined and deprived of your social rights and individuality; left to your faith, pitied, and labelled as a burden, no longer beneficial to anyone. It’s a harsh reality and it changes the way you look and feel about yourself, not to mention how it changes one’s proper identity.”
Rabiya considers herself a citizen of the world and believes there should never be borders of any kind between herself and other citizens around the globe. “You are my brother and sister no matter where you are, no matter what
your beliefs are. Especially as Alphas, we are all one, therefore, we should never feel that we are struggling alone because we are not! It’s ok to get sick and face an illness with no cure, but it’s not ok to feel hopeless. Life is a beautiful place to be, in sickness and in health.”
This positive message is what Rabiya wishes to spread as an Alpha warrior.
“Rediscover yourself and find new things to do with your new sick body. Behelpful and supportive to yourself and to others, now that you need it the most.”