CF Vests Worldwide
CF Heroes World Wide - Tunisia
We continue our journey to meet CFers outside of the western world. Last month we met Abdulrazak in Libya, and this month we continue to Libya’s neighbor to the west, with Adem in Tunisia. Tunisia shares a border with Algeria also, another country where we will probably meet someone from soon!
Cystic Fibrosis (CF) is a devastating genetic disorder that affects thousands of people around the world, particularly in third-world countries. It is a progressive, life-limiting condition that can cause significant physical, emotional and financial hardship for those afflicted and their families. Despite advances in medical treatments and awareness, people living with CF in third-world countries often lack access to proper diagnosis and care. In this blog, we'll explore the struggles of living with CF in third-world countries and their unique challenges.
Before we dive into Adem’s story, I think getting a brief history lesson is necessary.
Tunisia has a long and storied history, spanning thousands of years. The earliest inhabitants of the area were the Berbers, who arrived in the region in the 10th century BC. Around the 8th century BC, Phoenicians from the city of Tyre in modern-day Lebanon established a number of settlements in what is now Tunisia.
In the 3rd century BC, Carthage established itself as the dominant power in the area, creating an empire that stretched from North Africa to the Iberian Peninsula. In 146 BC, the Romans conquered Carthage and the region became a province of the Roman Empire. During the Roman period, Tunisia became an important center of trade and culture.
In the 5th century AD, the Vandals invaded and occupied Tunisia, ruling until the arrival of the Byzantine Empire in 533. The region remained a part of the Byzantine Empire until the 7th century, when it was conquered by the Arab Muslims. Tunisia was then ruled by the Islamic Caliphate until the 16th century, when the Ottoman Empire gained control of the area.
In 1881, Tunisia became a French protectorate and remained under French rule until 1956, when it declared independence. Since then, Tunisia has been a republic ruled by a democratically elected government.
If you have ever read the 7th chapter of Mark then you may have read about the Syro-phoenician woman who Jesus pretty much called a dog. In this story she has a demon possessed daughter and comes to Jesus hoping for a miracle. Syro-Phoenicians in the time of Jesus are Tunisians of today!
Jesus says to her, “Let the children be fed first, for it is not right to take the children's bread and throw it to the dogs.” Jesus was mirroring the thoughts of the disciples towards her, who felt that she should be ignored for not being a Jew.
But this woman, having great faith, replies boldly to Jesus saying, "Yes, Lord; yet even the dogs under the table eat the children's crumbs."
Then Jesus replies with about the greatest compliment anyone could have from God: Then Jesus said to her, “Woman, you have great faith! Your request is granted.” And her daughter was healed at that moment.
I think this is an amazing story and makes me think that all Tunisians have great faith. A great characteristic for a whole nationality to have! Adem’s faith is really the only reason he received a vest. We did not have a vest available or the funds to ship one to him. He also doesn’t know anyone outside of Tunisia, making it even harder for us to be able to provide a vest to him. But Adem kept pushing, messaging and making sure that we didn’t forget about him! To me it was a miracle almost as great as the Syro-Phoenician woman’s miracle, because to our team, it was impossible for him to get a vest. But we serve a great God and Adem’s faith made a way.
With that preface out of the way, we are finally ready to meet Adem Riahi, 24 yrs old and from Tunisia.
Adem was born in 1999 in Tunisia, when he was born they didn’t do a newborn screening for CF and therefore it was not found; he was born healthy and no one thought anything was wrong. When he was two months old, his weight had not increased and he had gotten sick with tracheitis, a bacterial infection of the windpipe (trachea). He was sick for about 4-6 months and the doctors were confused as to why he was so slow to get over it. The doctors decided to do a sweat test; when the results came back abnormally high, the doctors repeated the test and the results came back the same.
To confirm the results and to make sure that he had cystic fibrosis, they did DNA testing to find his mutations and they came back heterozygous delta f508, that means 2 Delta F508 mutations. They also decided to check his pancreas and found that it was not working well. The doctors decided that Creon and oxygen were the correct actions to take. At six months old he was on oxygen and Creon and his parents were learning what it was like to have a sick kid. When he was sleeping he was on oxygen, when he was awake he was on oxygen, and when his parents saw him on oxygen it felt like a punch in their stomachs.
They had the hardest time figuring out ways to get the mucus out of his lungs, doing percussion and wishing they had the means to find a way to get him somewhere with proper care. When he was an infant his parents met another family with a child who had the same mutations as Adem had. His name was Abdul Rahman. He died at the age of two because the disease was too aggressive for him. Adem, just like every CF warrior in Tunisia, past and present, has had to fight to stay alive. The doctors told my family that I would only live until 20 years old. Adem states that the only thing that has kept him alive so long is his great faith in God.
When he was three years old, there was a slight improvement in his lungs, so the doctors decided to take him off of oxygen, but like almost every other CFer in the world he kept taking Creon and vitamins. He would love to tell you that after diagnosis and his first infection things got better, but he kept getting infected and he stayed in the hospital three times a year because he had Pseudomonas and was always getting chest infections. This was hell on his parents and family, always being admitted and wondering if your child will live or die… 3 times a year.
When he was 6 he started school, and he had to wear a mask out of fear of infection and the children at school didn't understand why he was so different. They always made fun of him and bullied him because he was different. Even the teachers at school didn't understand the nature of the disease, but over time his friends started to understand CF. He was just excited that he had friends.
When he was young he had a normal life, but he was excused from doing sports. At that time, he didn't understand what cystic fibrosis was, because in the hospital they didn't explain to him what cystic fibrosis was and what damage it could cause. His parents were in the dark as well, not understanding where the disease came from, how to stop it or even how to prevent hospital stays.
When he was 10 years old, the doctors decided it was time for him to start nebulizing. He got a nebulizer and he started nebulizing colymicin (An injectable drug that is commonly nebulized where tobi and cayston aren't available), albuterol and saline to try and slow the Pseudomonas down. The medicine helped him a little bit, but it was only a band-aid.
When he was 11 years old, he was forced to drop out of school because the school was too far and he was too tired to walk back and forth. His family was too poor to be able to afford a motorcycle or car to take him back and forth. Despite this, he still got sick and was admitted to the hospital. He tried to be strong and keep his faith in God.
One time, when he was admitted he was able to meet many patients with cystic fibrosis, young and old, including a girl named Heba and another girl named Yasmine, but they both died because of CF. CF is an insidious disease that is very good at taking away all your hope, but Adem said he will not let CF take away his hope or his great faith in God, and he will keep fighting as long as there is air that will go into his lungs!
And when he was 17 years old, he decided to do sports, but he wasn’t sure what sports he could do with his diagnosis. He decided to go into tae-kwon-do because he loved martial arts and kung-fu movies. He was doing well and loved being able to get out on the mat and get out his aggression and anger – until the CF took over and took him out. He was admitted again and had to stay for over a month. During that month they pumped him full of all kinds of drugs and did a whole litany of tests. His oxygen saturation would not move past 89 for a month. He was trying so hard to breathe and it took a lot out of him just to fight for air. After about 40 days he was finally able to bring his oxygen saturation to a healthy 95 and get discharged from the hospital.
When he was 20 years old, the doctors decided that he should transition to adult care and go to a respiratory hospital. He was the only CF patient in the whole hospital, and he was left in a room all alone and ignored because the doctors were afraid that he would get sick from all the other patients. The doctors were afraid of getting him infected because his immune system was weak. At 20 years old he was only 45 kgs (about 100 lbs), and so he was sent to see a gastroenterologist to see if they could figure out what was going on with his digestion. Currently they have no idea what is wrong.
At 20 years old, it has been a long hard road for Adem; he has learned how to fight and how to stay alive. He has had to learn how to deal with cystic fibrosis and how to make the best out of what life gives him. He is currently unemployable in Tunisia and he still takes all of his medications, Creon, vitamins and nebulizers. He takes his life one day at a time, and he is determined to make something of it. He is an inspiration to all CF warriors in Tunisia, and he is determined to make a difference in the CF community, and he will continue to fight until there is a cure.
I have to say that Adem is the most persistent person I have ever met! He will not take no for an answer, and his persistence is what allowed him to be able to have a vest sent to his country. We are so happy that we were able to provide him with a vest, and are glad that we can provide him with the hope that someone outside of his family and friends cares about him that a vest provides! We want to encourage Adem to never stop fighting and never give up that faith in God! You are fearfully and wonderfully made!