Islamabad - In a society where it is indeed very hard even for a healthy and stable person to live a normal life, someone suffering from a physical malady like psoriasis is definitely putting up a real fight.
Recognition and understanding of such a skin disease is almost non-existent and it becomes a taboo. The patient’s of psoriasis are struggling everyday against all odds to recover and start living again like normal people. More than labouring the malady, it’s the attitude of society towards them that affects their spirit and ray of hope to recover. Psoriasis is chronic, inflammatory skin disease with impacts of red, itchy and scaly patches because of the destruction of cells on the upper layer of the skin.
This sort of indifferent and abnormal change causes the skin to become rough and it starts to peel off giving way to new skin to take its place. This keeps on going until the same is cured with medication for the time being.
The vulnerable target group ranges from the age group of 20-30 with aggravated magnitude in the age group of 50-60. The head (scalp), lower back and legs are the organs of the body that mostly get exposed to the disease but it can spread to the other parts of the body as well.
To measure the intensity of the disease there’s an activity score index called “Pasi”. In the mildest degree of the disease only a patch on the finger, nose or ear may appear and that too without an itch or pain, over a period of year with intervals. However, in aggravated/second degree of the disease if affects 70% of the body, substantially penetrating into the bones and joints, leading to arthritis psoriasis.
The patient at this stage suffers from severe pain and itching, with common complaints of restlessness, agitation and sleeplessness. Insomnia and depression comes in packaging with the added sufferings to the disease.
There is a great misconception about the disease, in the context of thinking of the people about contagious aspect, which in fact relates to the dealings of the people with the patient in the normal pursuits of life as it ought to be. The patients in such circumstances often feel segregated and confined. They stand deprived of socialisation and people do not appreciate mingling with them or inviting them at the ceremonies and evens, rather at times avoid shaking hands, let alone sharing a meal or refreshment with them.
The psoriasis patients also face challenges in their educational or professional careers. They often have to consume long leaves for their treatment. It’s hard to concentrate when you’re suffering both physically and mentally in the case of the disease. The patients need supportive and healthy milieu. People with psoriasis, how talented maybe, often end up leaving their studies and jobs and sit at home because of the improper treatment they get from their peers and colleagues.
In such cases depression adds to the sufferings and the same needs to be treated along with psoriasis, but in our society, our norms and taboos do not really let us cater to the needs required as part of the treatment of the mental sufferings. It’s taken very lightly and is assumed that anxiety gets subsided/managed with the passage of time and not being a serious issue as to seek medication or formal help and counselling.
According to the latest surveys out of every 100 skin patients, 20 are suffering from psoriasis, which makes it 2.7% of the total population. In the initial stages, the disease can be managed with the help of steroids such as ointments, balms and creams, which is not a permanent cure. But no one can live on steroids for one’s whole life, as there comes a stage when lungs and kidneys become dysfunctional and puts the life to an end.
As of yet it stands as an incurable disease in Pakistan. Last year “Novartis” a multinational pharmaceutical company, came up with a permanent cure in shape of injections. The injections have not been introduced in Pakistan so far. Some people are working really hard to put a word across to the government and the health ministry, that has miserably failed to invest from even the meagre amount of 2.5% of the total budget allocated to health.
One injection costs around Rs 1.3 million and two are needed to cure the disease permanently, which in total per patient would cost Rs 2.6 million. It has been proved to be a 100% success worldwide, the patient recovers fully within the time frame of 14 weeks with absolute smooth skin.
Brig Dr Zafar Iqbal Sheikh, head of the dermatology at Military Hospital Rawalpindi, says, “There is lack of awareness about psoriasis. Patients are ignorant of the fact they would have to continue treatment for life.”
In the prevalence socio-eco conditions of our society the cost to be incurred on the treatment of psoriasis is literally beyond affordability for most of the patients. Fifty-five per cent of the population cannot afford the expenses. Particularly hailing from middle or low income families, a patient who in case of men, is without a job and probably the bread earner of the family with liabilities and responsibilities, and is already left to cope with the financial crisis. And even worst in the case of women, when diagnosed of psoriasis are often divorced with children sent along. Many elderly people are even abandoned and thrown out of the houses. Both the genders if fall prey to the disease in their single life, in most cases remains unmarried for their whole life, with the concept of the disease travelling to the genes.
Under such grave circumstances, the depression in psoriasis’s patient leads to such an extent where the patient pauses to ponder to commit suicide out of frustrations. Just earlier this year in March, at Karachi’s Chamra Hospital a suicide incident of a psoriasis patient took place, which was never reported by the authorities.
“This is a skin deep disease and its physiological impacts can be very strong since the patients have to go through poor quality of life and social stigmas associated with the disease. There have also been incidents of psoriasis patients committing suicide due to lack of social support as this is a lifelong disease which can become a burden for the family financially,” says Dr Muneeza Rizwan, who is head of the dermatology department at PAF Hospital Islamabad.
The government is showing no interest in paying subsidies for the expensive treatment and introducing the injections at home. The government’s negligence of healthcare can be judged by the fact when inquired about the proceeding of the treatment; the ministry of health seemed unaware of even the basics of the disease.
There’s no budgetary allocation for diseases like psoriasis, despite the fact that more than five per cent of the population is suffering from this disease and 55% cannot afford the lifetime expense or the permanent cure.
-The writer is a freelance contributor.