I am delighted to post my first ‘guest blog’. Please read this story and, if you can, please donate to the charity that the inspirational Ardo Ali has founded.
My name is Ardo Ali and this is my personal story to give people an understanding of the difficulties that come with TB. I was born in a mid-region city called Dhuusamereeb, in Somalia, around 500km to the north of the capital Mogadishu.
I moved to Mogadishu with my mother and siblings, with my father shortly following us to the capital. I became ill before the arrival of my father. Once he arrived to Mogadishu he became aware that I had fallen ill and decided to take me to the hospital. This is where I was diagnosed with tuberculosis (TB) at a young age.
I felt that everyone I knew had stopped contacting me as soon as they found out about my condition. These people also included my very close relatives. At times I was teased and bullied by other people and was told not to come near others cause of my TB. I would often complain to my father and he would comfort me and tell me to ignore them; however this led to my depression, as I was unable to deal with people’s harsh treatment and unable to sleep at night and the only thing that eased this was the fact that my father would stay with me till I finally fell asleep.
The journey out of Somalia
Shortly after, the civil war in Somalia happened, which led to medicine being scarce so it was not easily accessible to those in need of medication. During this period I was also diagnosed with Hepatitis B, before I completed my TB medication. This only complicated my health further. My health deteriorated a lot and within days of the war starting, our local area became very inhospitable. This meant that families started leaving to seek sanctuary where fighting wasn’t happening or wasn’t as intense. We left our local area on foot.
I was so frail and weak that my body could not cope with long distances and had to take many breaks to rest. This left me incapable of keeping up with the others and we were left behind as people tried getting themselves to safety as soon as possible. The only person that could stay behind with me was my mother, and at some point we found ourselves going without food for seven days. Throughout our journey to seek safety we came across many corpses of those that had been shot.
We also saw the corpses of those that had been hit by the bombardment of missiles landing on their homes and in their streets. Whenever I was tired and couldn’t go on, my mother was there to carry me. However she could only carry me for very short distances. This left us having to take a lot of breaks. Every time a missile landed near us, she would cover me with her body so that I wouldn’t be hurt and after two weeks of travelling to get to a shelter, we safely met the rest of our family.
At this point I was extremely ill because I had not taken any medicine for the TB. My father arranged for me to go to Kenya so that I can look for medical help, but the medicine was too expensive. With my condition still bad I arrived in Denmark in 1993 in the hope of finding treatment. I was admitted to a hospital in Denmark where my TB was diagnosed and was treated for two weeks under quarantine.
In London – ignored due to ‘mental health problems’
Later, in London, I was detained at the Florence Nightingale Hospital in Marylebone. I was in and out of this hospital from 20th January 1997 until 2002. During my stay in this hospital there were a lot of emotional problems I had to deal with. I felt imprisoned and isolated again and my family was not there to support me. I felt that anything I had to say to the doctors in regards to my own well-being was dismissed.
They strongly believed I was anorexic, and what doctor would listen to someone that has already been labelled as having a mental health problem? At this stage I personally did not know what anorexia was as such a condition is not commonly heard of in the Somali community In the UK, and even more so in Somalia.
It was because of being sectioned that I had learned what Anorexia was by being surrounded by those that suffered from this mental condition. I thereby gained an understanding of its difficulties and severity.
In 2002 I returned to The Royal Brompton Hospital as I wasn’t getting any better. When I returned I was given a ventilator which gave me new hope. I was able to breathe much better with it than I could by myself. As soon as I was placed on the ventilator I started putting on weight and becoming healthier.
I never managed to put on 1kg during my 5 year stay at the Florence and Nightingale Hospital. This shows that I never suffered from Anorexia, and this was also subsequently confirmed by my doctor. I should never have been sectioned at the Florence Nightingale Hospital.
This made me feel like five years of my life was wasted. However, the one thing I will never forget is meeting the late Princess Diana there, three months before her passing in 1997. We were a group of ten girls who were diagnosed with eating disorders and we were told that someone special was coming to visit us. When we met the princess, I was shocked as I never believed that I would get to see her. I noticed that she was even more beautiful in person, both inside and out. She read us a section from Louise L. Hay’s book “The power is within you” and we were all given a copy with the princess’s autograph. I now regularly visit doctors at The Royal Brompton Hospital and I am extremely grateful to them as well as my doctors at St. Mary’s Hospital.
I would like to tell you all that TB can be a very severe disease and can greatly affect your life. If you think you may have TB visit your GP as soon as possible and follow the treatment set by your GP strictly. Never hide your condition as this can lead to many complications, and you may go on transmitting it to other people. The treatment for TB is simple if you are diagnosed early enough.
About Tuberculosis Silent Cry
Tuberculosis Silent Cry (TBSC) is a charitable organisation set up to help those suffering from Tuberculosis (TB). TB is a serious condition and is a major health problem in the UK, particularly London. Thanks to treatment the number of cases has dropped significantly. However, in the last 20 years this number has increased especially amongst ethnic minorities who are from areas where this infectious disease is more common.
TBSC helps support those suffering from TB, especially in communities that feel too ashamed to admit they suffer from it. The founder of this organisation has suffered from TB and has had first-hand experience with the difficulties and struggles that come with having TB.
The incidence of TB is found to be the highest in those from India, Pakistan and Somalia. Surveys carried out within the Somali community have shown that 118/628 people would see their GP if they felt they had TB. When asked why they would not see a GP and be diagnosed the majority stated that they felt too ashamed and feared isolation from their community as well as their family. This shows how there is still a social stigma surrounding TB and its why our main aim here at TBSC is to provide people with the necessary information and awareness for them to speak up and get the help they need.
We are here to educate those with and without TB about the dangers and prevalence of this disease even though it is curable. We hope that by tackling this issue we can help prevent TB and reduce its incidence within the UK. We hope to able to expand our services in time to the countries where TB is more prevalent. This will reduce the incidence of the disease within those countries as well as in the UK. There are a lot of people that decide to come to the UK while they have contracted the disease in their native country. This leads to the spread of TB in the UK as it is an infectious disease that can be spread through close contact.
We are a self-funded organisation and do not receive support from the government. There are people unable to afford the necessary treatment for TB as they have either no job or residency papers that allow for them to find employment. The donations received from people in the UK allow for us to give help to the people in these unfortunate circumstances. This is why every donation is incredibly important as it will provide us with the means to provide the necessary help to those suffering.