Last week would have to be one of the most worrying that a parent can experience.  My son was diagnosed with a genetic disorder, Marfan Syndrome.  We now strongly suspect that he was misdiagnosed and are trying to understand why someone who we trusted, purely because of their ‘title’ would be so careless in their moral obligations.

The Physicians creed ‘first, do no harm’ seems to be the creed of TV doctors or maybe I am cynical after our experiences of the last week.

My eldest son had been having nose bleeds.  Not that much to worry about, but one every second day, then three in one day.  They can be the most unpleasant of minor ailments.  All that bright red blood, enough to make you feel sick!

As our GP had retired, and we hadn’t yet gone to our new GP, we were stuck without a referral to see the ENT.  I asked my husband to take him to the local medical centre, ask them to write a referral, we would then see the ENT, he would cauterise the offending nostril and all would be good.

The medical centre GP had dollar signs in his eyes when he saw them come in.  He measured, poked, prodded  x-ray’d and then pronounced that he had ‘Marfan Syndrome’.  Now, either he is a super amazing GP who has had lots of experience in this syndrome, or he was scaring the pants off us for no reason other than to make a very unethical sale.

While my son was in x-ray, my husband called me and gave me an update.  I was at work.  I immediately started googling Marfan and was very alarmed by what I found.  “Sometimes, no heart problems are apparent until the weakening of the connective tissue (cystic medial degeneration) in the ascending aorta causes an aortic aneurysm or aortic dissection, a surgical emergency. An aortic dissection is most often fatal and presents with pain radiating down the back, giving a tearing sensation.”

The ‘doctor’ then went on to explain to my husband that in addition to, or as a symptom of Marfan Syndrome, he had scoliosis and he just happened to own a company that produced special Kinetic orthotics that would correct the scoliosis.   He then took my husband’s credit card details and asked him to come back in three days and the ‘custom-made’ orthotics would be ready.

We have since had my son checked out at our new GP.  He could find no major presentations that would indicate Marfan Syndrome, but now we will have to attend a specialist clinic at the Children’s Hospital just to rule it out.

The hardest part of this whole ordeal has been the abuse of our trust in the Medical Centre GP.  I am probably being really naive thinking that Doctor’s take their title and training as seriously as their patients do.  Probably most do.  There are a few bad apples in every profession.


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