Over the past one year I have been shocked to hear of medical practitioners who drain the life out of their patients by the way they deliver their diagnosis of Muscular Dystrophy to be specific.
Recently when I talked to the aunt of a young boy, Jonah, (not real name) with muscular dystrophy I was disturbed when she shared the manner in which her brother, Jonah's dad got the news that his son had muscular dystrophy. This doctor had an idea of what MD was but he must have seen very few cases to warrant his level of crudeness. He broke the news to these parents that their boy had MD and went ahead to say the following things
1. Your son will soon not be able to use his hands.
2. He will be unable to walk
3. the weakness will travel to the res of his body
4. His heart and vital organs will get tired in time
5. He will soon die!!!
As though that was not enough, the doctor went ahead to tell them that they need not waste their money on him because after all he was going to die.
Now, I don't know at what point a doctor feels as if that is the best way to break news to parents of a boy who has a condition that they have no idea where it came from or what caused it.
Within an hour I called a friend of mine to express how wrong I thought the scenario was only for her to tell me her own experience in the hands of a similar doctor.
When she got her diagnosis at around 15years, the doctor even went to the point of telling her and her parents that she would not live to see her 18th birthday and that by taking her to school they would be wasting their money! Unfortunately for this lovely lady, now in her 30s, and her family, this had enough weight to deny her a chance to go to a national school and end up in a special school and consequently miss her chance to go the the university despite her impressive grades.
The reason I was shocked that such doctors exist is that I got my diagnosis from an Occupation Therapist who said nothing about dying in the next few years. In my search for the diagnosis, we did rounds to doctors whom we thought might/should have the answer, went for a scary MRI( Magnetic Resonance Imaging), to neurologists who had no idea what the condition was but that was as bad as it ever got for me.
If you are reading this and thinking that this is information that every doctor should have, I thought so at some point too, but after knowing that all through medical school Muscular Dystrophy is a little known condition because of the fact that it is a little known rare condition.
I met a pediatrician this week who has only seen three cases of MD in his over 20years work experience and I can bet he is not the only one.
I guess my point is, not all doctors know about MD, in fact very few have met someone living with MD but this is still no excuse for a crude delivery of diagnosis to new patients.
Let us make this information available to more people out there.
Stay blessed.
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