Well May has come and gone and I have
done nothing to raise awareness this year.
This is very unusual for me. Since my
diagnosis, I have posted information about EDS every year. The more people are
aware of the condition, the more people are likely to be diagnosed correctly
and treated accordingly.
Unfortunately, not many Doctors are
interested in learning about EDS. I took my young adult daughter to a new
General Practitioner (GP) within the practice to get a prescription for pain
medication. When we mentioned the EDS, she was oh ok, I have heard of it, but
never thought I would ever see a patient with it. And that was where the
conversation on EDS ended.
As GP’s are our first contact with the
medical field, one would think that they would be interested in meeting
patients with these rare conditions and take some time to ask questions and do
a physical examination to make themselves more aware of the condition and what
factor to look for in future patients.
On the flip side. I was on a flight from
Sydney to Auckland and seated next to my husband was a Paediatrician. I
politely asked if I could ask a medical question. After their consent was
given, I asked if they had heard of EDS. The Dr had heard of it and wanted to
know why I had asked? I told them I have EDS. The Dr immediately asked if they
could examine my hand. The Dr then spent a few minutes moving my fingers and
hand around checking my flexibility.
The Dr on the plane was far more
interested in EDS than the GP who was physically treating my daughter.
No wonder so many people who have EDS go
for so long before they are diagnosed. I was 44 and my daughter was 18 when we
were officially diagnosed. I have had many misdiagnoses throughout my life. No wonder it is so hard to get diagnosed.
