This blog is dedicated to all the Porphyria patients worldwide.
The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org
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6 Things You Need to Know About Invisible Illnesses Part 1 of 6
Even though Porphyria is not mentioned here, most if not all of us can understand these 6 Things of Invisible Illness Part 1 of 6
being so frozen with fear and dread that you refuse to get out of your car.
Even though you know you’re sick, you know as soon as you step out
that people will see your lack of a wheelchair or crutches
and do a double take of the handicapped spot you’ve parked in.
The sad truth is that unless your disability is blatantly physically
obvious, able-bodied people assume you’re
just like them.
Yet the truth is that about 96% of us disabled people have
what are called an invisible illness. And because they’re invisible, people assume we’re
faking all the time. And the scariest thing is
that many painful chronic illnesses go without acknowledgement or recognition
from society, even within disability circles.
An invisible illness can be
mental, physical, or both. There usually aren’t too many outward signs of said
illness, which is why the phrase “but you don’t look sick”
is both widespread and completely missing the point.
Take me, for instance.
I look like a rather healthy and young person. And yet, I have maybe
ten invisible illnesses. Starting with my very first menstrual cycle, I spent
two weeks out of every month doubled over in pain, wanting to kill myself,
being told it was all in my head.
I grew older and eventually the intense pain spread to the rest of my
body. And as the sexual and emotional abuse worsened, so did my mental health.
Eventually I became a bit of a shut in.
Then I began receiving worse and worse diagnosis of chronic – invisible
The most debilitating ones are endometriosis, Polycystic Ovarian
Syndrome, Premenstrual Dysphoric Disorder, and fibromyalgia. I don’t suffer as
much from my Post-Traumatic Stress Disorder anymore, but I do still deal with
secondary depression and anxiety.
Q & A WITH PORPHYRIA EXPERT, DR. BRUCE
WANG, UCSF The APF asked our Facebook friends for their top questions they
would ask a porphyria expert.
The following questions were submitted
to Dr. Wang for his responses ...
Q. Does EPP give us bad teeth? Also, do people with EPP
get stomach pains or is that with the other porphyias?
A. The porphyrin that accumulates in EPP patients is protoporphyrin
IX, which does not cause discoloration to teeth or abdominal pain.
The type of porphyria that leads to discolored teeth is Congenital
Erythropoietic Protoporphyria. The porphyrias that lead to episodic
abdominal pain attacks are the acute hepatic porphyrias.
Q. I have EPP and I have a severe reaction on my hands
and lips. Do I seek urgent care? Also, what can you even do
when you burn your lips?
A. The acute reactions to sunlight in EPP can be very severe and,
unfortunately, there are not many effective options to treat the
symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as