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CATHERINE W GICHUKI
DOHA
IN Qatar, there are about 77 patients living with cystic fibrosis, a genetic disorder that affects mostly lungs but also the liver, pancreas, kidney and intestines.
Of these patients, 86 percent are Qataris, while the others are from other nationalities, according to HMC Senior Consultant of Pulmonary and Weill Cornell Medicine-Qatar Assistant Professor Dr Mona Allangawi.
Dr Allangawi said, “Most of our patients come from families having consanguineous marriages. There are families having more than one person affected by the disease. There are altogether 77 cystic fibrosis patients, including adults and children, of which 62 are Qataris and more than 32 of them are adults (41%).
Dr Allangawi explained that cystic fibrosis is a hereditary disorder and multi-system disease.
According to her depending on the severity of the disease, some patients may be diagnosed early while others may be diagnosed at the age of 20 or 30.
“There is no cure for this disease but medication, proper management and early diagnosis can help in controlling the disease, treating the symptoms and improving the quality of life for the patients and also life expectancy. In the past, people having the disease died in early years of their lives, but now life expectancy has improved to between 40 and 50 years.”
According to her, severe constipationduring birth and later on recurrent chest infection, chronic cough and pancreatitis are some of the symptoms of the disease.
Depending on the severity of the disease, some patients might need to be admitted to the hospital two to three times a year while some others might be stable and might not require hospitalisation for five years.
She, however, advised parents to seek medical intervention if they notice their child to have constipation at birth, salty skin, recurrent abdominal pain, recurrent chest infection, nasal polyps and pancreatitis.
Dr Allangawi said that she has come across a patient who was diagnosed with the disease at an advanced stage at the age of 20. However, with treatment they were able to control symptoms and progression of the disease, delay complication and improve the quality of her life.
She added that despite the disease, a patient can go to school, work or even get married.
According to her, they always advise these patients to avoid any situation that can make them have an infection and avoiding those who are acutely sick or have flu. “They should receive regular vaccines; take antibiotics whenever is required ansdo regular chest physiotherapy to remove the secretions in the lungs”, she added.
According to her, the care and management of the disease in Qatar is world-class and at HMC they have a multi-disciplinary team to follow-up with the patient. “We call the patients to come and visit us every 3 months where they are assessed by nurse and seen by dietician and physiotherapist. Lung function is done in every visit to make sure that they are maintaining good lung function. Sputum culture is also done in each visit and then they are assessed by a physician.”
Dr Allangawi urged patients to avoid the sun and keep themselves hydrated. “They should also eat more salty food; take nebulizer medication; take antibiotics as prophylaxis; take vitamin supplements and also crayon to replace pancreatic enzyme to help in the absorption of food and vitamins. We advise the patients to eat food rich in calories, fat and salt.”
According to her, the patient also might be suffering from vitamin D deficiency and stunted growth and might develop diabetes and osteoporosis.”
She said that almost 30 percent of the patients in the adult age group have diabetes, which is not type 1 or 2, but unique one.”
They might also have liver cirrhosis. According to her, 98 percent of male patients are infertile, but they can be treated through IVF. “Female fertility is less than normal.”
She said that this disease is more common in North European decent where one out of 2500 to3500 newborn, has cystic fibrosis compared to the Arab region where one of 10, 000 newborns has the disorder.
It is noteworthy that the HMC held Cystic Fibrosis Awareness Day at Hamad General Hospital earlier this year to raise awareness about the disease.
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11/07/2019
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