I entered the hall crammed with honourable guests, dressed marvellously in splendid colours. I looked around to catch someone’s sight, I knew. My attention was clutched by a crowed in the corner of the hall. I could see children, teenagers and some grown-ups giggling and passing comments. I was just inquisitive to know, yet I ignored. I greeted my friend and her parents and then tried to get some space to sit. I could see the pillar behind which, that ‘something’ was exhibited. I tilted to an extent that I was able to see it - I was shocked – I held there for a moment and then I tilted back. Hundreds of thoughts overwhelmed me. It took a moment for me to relax – then I got up and walked up to that crowed. The crowed was amused by nothing but a physically weak lady, she was suffering from a disasters disease that made her reflexes and movements uncontrollable yet she was mentally as sound as we are. Despite of her condition she was brave enough to make an effort to attend the wedding ceremony of her beloved friend’s daughter.
She was sitting there helplessly, watching people making fun of her. I wanted to push everyone away; I wanted to make them realize it’s inhuman to make fun of someone’s misery. Thought over thoughts – I was traumatized; a child ran to call his mate and they all stood just two feet away from her, they all pointed figures at the lady and passed comments. The worst factor was that the parents of those children were the part of that crowed. A girl who must be in her twenties was sitting just beside that lady. She looked equally wretched – her eyes were red with anger and her stare could easily be interpreted as “please people go away”. I could not resist anymore. I snubbed a woman from that crowed by saying, “kal is majbuur aurat ke jaga aap hon to? na khud aap ko is baat ka ehsaas hei na aap apney bachoon ko mana ker rahee hein … ” She stared at me as if she felt awfully insulted, but certainly it was not more than what she was doing. She called her son and walked to the opposite corner of the hall. Then gradually I and her daughter managed to disperse the crowed. Mental disorders, despite of its’ sort, is a big dilemma in the under developed societies especially ours and lack of awareness and poor economic conditions create a strange sense of rejection towards them.
That lady was suffering from a rare genetic disorder characterized by quick involuntary and jerky movements-Huntington’s Chorea or Huntington's Disease (HD) that develops between 30 and 50 years of age and the patient's condition deteriorates over a period of about 15 years to total incapacitation and death. This disease is caused due to the presence of a mutant gene; now this could be as a result of an instant mutation or the presence of a mutant gene that has passed on through generations.
As the fact of the matter this gene is dominant in nature and hence it will appear in the future generations only if the offspring is carrying it and if the offspring is not carrying it the future generations are completely safe. i.e There is a 50:50 chance each time, so each child is at 50% risk. If anyone has the faulty gene they will, at some stage in life, develop the disease. Also, the disease may be inherited in anyone regardless of their gender.
General symptoms of the disease are, progressive loss of mental function, changing personality, loss of judgment, abnormal facial and body movements, including quick jerking movements of arms, legs, face, trunk, movement, anxiety, stress, and tension, difficulty swallowing, irritability, moodiness, restless, fidgety, hallucinations, loss of memory, disorientation or confusion, gait is often shaky and shooting wide, difficulty in pronouncing words, loss of ability to care for self and interact, un-deliberate or deliberate injuries to self/others, increased risk of infections, there is a progressive need for assistance and supervision and 24-hour care may eventually be required. While talking a girl at risk she said, “My mother is an educated lady and it’s been 11 years since her disease started emerging, me and my siblings are at risk, but we have accepted the fact … its distressing to realize this but the reality wont change for us whether we accept it or not. I just pray to God, if he puts us to such tests, please bless us with patience and tolerance too - we must not forget, there is a life thereafter.” She added, “I would choose to be tested; I can’t change the bitter reality of life but what I hate the most is – ‘Uncertainty’.”
There is no cure for HD, and there is no known way to stop progression of the disorder. Genetic counselling may be advised if there is a family history of HD. Though the test can tell whether one carries the HD gene but it cannot tell when the disease itself will start to express itself. The test is not available in Pakistan
Information about genetics of HD should be shared with children prior to their family planning so that they can receive the most current information. Not telling children does not take the reality of the situation away in fact it makes children powerless to make informed choices about their lives as they grow up. An interviewee who is at risk said, “I was young when I got to know that HD was running in my family but I believe at that age I was flexible enough to digest this truth, otherwise it would have shattered me badly if dreams of an ideal life had developed.” It may be hard to find the right time and the right age to discuss it with them. It may be tempting to totally avoid discussing them at all.
Relationships between parents and children can suffer too if a parent is trying to hide the facts. Even very young children are smart at realizing when you are not telling the truth. It is almost certain that children will find out the facts one day. Genetics are taught as part of the national curriculum, and genetic illness is currently highlighted in the media nearly every day. Between 40% and 79% of people at risk of developing HD reported intention to use the test. Interest in genetic testing was found to be negatively associated with being married and positively correlated with the number of affected relatives and earlier parental age of onset of HD. The most commonly reported reasons for wanting to be tested were to be certain, to plan for the future, and to inform children.
People who decide to have the test are more likely to have higher educational levels and women tend to be over represented, possibly reflecting women's traditionally greater involvement in reproductive decisions or concern for existing children. The most commonly reported reasons for choosing not to have the test related to the emotional and psychological consequences of a positive test result such as fear of searching for symptoms and of losing what hope could be retained. Knowing that you are at risk may affect your decisions about having a family of your own. Some people decide never to have children at all, while others go ahead on the grounds that the children are likely to have many years of normal life before developing the disease. IVF (in vitro fertilization) and AID (artificial insemination by donor) may also be considered.
Unfortunately, in our society the patients suffering from the said and related diseases are taken as a victim of ‘Jadu Tuna’. Hence the case that is to he handled by the immediate family members and an authentic neuro-physician is taken to the ‘peer babas’ and mystics. If not that then the patient is sent to the pagal khana - the mental hospital where their condition deteriorates faster.
Regrettably, the attitude of our society towards such patient is dreadful. The girl at risk said, “I hate when people make fun for my mother, she understands when people treat her indifferently, this disease certainly deteriorates the physical condition of the patient but the mental state remains perfectly fine. The understanding of relations, happiness, sadness, feeling of love and care remains the same. But people when see her make it so obvious as if she is a source of amusement for them or they will stare at her as if she is an alien. The attitude of the society MUST CHANGE.”
She added, “I just wish that someday a miracle happen and I see my mother standing in front of me – just the way she used to be – twinkling eyes, energetic, smiling, bestowing her love and care and protecting her family – She was and she is the best mother.” Then tears came in her eyes and she said, “those who have sent their parents to orphan homes or mental hospital, just because they cant take care of them - please bring them back ... they don’t need electric shocks; all they need is your love and concern –
Remember! No one can love you the way they love you … take ‘good’ care of them before they become a history…”
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