I have recently been encountering some health issues and
in the course of the last year have been referred to, and consulted with, six
medical specialists. My question to all of the specialists was fairly simple
and straightforward, namely ; “Are these symptoms the result of the muscular
dystrophy, or are we dealing with another health issue?” Not one was able to give me an answer. Not
one appeared to even understand my question. Not one had even the vaguest
knowledge about muscular dystrophy. Not one made any attempt to find out more
about the condition (despite my providing a detailed report weeks prior to each
consultation). Not one of them really examined me. Perhaps they thought that
muscular dystrophy was contagious! Not
one has come back to me with more information or ideas despite my specifically
requesting such. Many words come to mind, most of them unprintable in this
magazine, so perhaps the most generous would be “clueless”, albeit a very, very
expensive clueless.
I was presented with various solution suggestions, with
each doctor believing their solution to be the correct one, and not taking into
account any of the other variations. The gastroenterologists felt it was
definitely intestinal related, the neurologist thought it was definitely neurological,
the dietician felt it was definitely diet related, and the physiotherapist said
it was definitely body posture related. The neurologist recommended a further
specialist, a spinal surgeon, but since he was already talking surgery one
didn't need to be a rocket scientist to realise what the diagnosis was going to
be. I tried contacting the National Health Laboratory Service seeking a
recommendation for a doctor who was familiar with muscular dystrophy, but drew
a complete blank there. It would all be amusing if it wasn't so serious.
I came away from these consultations feeling very
disappointed, dissatisfied and somewhat disillusioned. It bothers me that such
a wide ranging group of medical specialists had such little knowledge about
muscular dystrophy. It was as if the dystrophies are alien diseases, never
encountered before. This led me to reflect on the fact that we have an
extensive amount of information on the supposed causes of the disease, yet very
little of the day-to-day effects the disease has on each of us. Knowing the
causes of muscular dystrophy is a bit like being given the winning lottery
ticket numbers, after the lucky draw. The information is interesting, but
ultimately quite useless. It would be far more valuable to know how to live with
muscular dystrophy, and what to expect as one ages with the disease.
In my search for a solution I took to browsing the
Internet disability discussion forums of which I am a member. There are a
number of them, mostly privately owned and managed. New Mobility, PowerQuad,
Wheelchair Junkie, Wheelchairdriver, and Apparalyzed to name but a few. The
last, Apparalyzed, is certainly the finest example of a disability discussion
forum and is run extremely well by Simon Roulstone.
What is interesting to note is that they mostly serve the
spinal-cord injury (SCI) community. I have searched high and low for a muscular
dystrophy discussion forum and have yet to find such a beast. The SCI
discussion forums contain a wealth of information covering accessibility, employment,
health, recreation, relationships, medical information, all with an
international perspective. In the past I have made use of these forums to
educate myself on various matters associated with disability (mostly assistive
technology) would have allowed me to make far more informed decisions than
would normally be possible. As with all things Internet one has to navigate
around some of the comments, but the positive and valuable information far
outweighs anything negative.
I cannot help but think that we, the muscular dystrophy
community, are missing out on a similar opportunity to help one another. The
formal medical profession does not seem to have information about how muscular
dystrophy affects, or will affect, us on a daily basis. There appears to be no
cross pollination of data within the different profession's, and no database
which can readily be called upon to source information.
Perhaps we are the ones who should be developing a body
of knowledge, in the form of a dynamic and accessible discussion forum. This
would be open to anyone around the world, whether you are an MD sufferer, a
parent, in medicine/health care, research, accessibility technology, etc. In
short, anyone and everyone who either has, or is associated with, muscular dystrophy.
The recently promoted “HealthUnlocked” website is an
attempt at creating a muscular dystrophy connected discussion forum, but
unfortunately its format is unwieldy and impractical, which perhaps accounts
for the fact that there have been no new posts in the last two months (compared
to Apparalyzed which averages about ten new posts every day). The key is the
use of a bulletin board format which encourages easy and active participation,
organises the content into logical groups, and allows access both via a
computer or a mobile phone. Internet usage is increasing rapidly in South
Africa, while the cost of access is tumbling. It is in fact one of the few
expenses which is going down each year. These opportunities and the range of
benefits they offer are now, quite literally, at our fingertips.
Hopefully my comments will trigger some communication in
this regard. If forums such as those mentioned above can be funded by private
individuals then there must be an opportunity for a similar format to be established
by one of our institutions in conjunction with advertisers who can make use of
the online exposure.
