I am sure I spend my entire life continuingly frustrated and angry! By the way society seems so shallow and morbidly interested in the pain and suffering of other peoples lives.
I watched a television programme last night. About one
of the many conditions which causes adrenal insufficiency. CAH congenital adrenal hyperplasia.
A serious genetic condition affecting 1 in 15,000 births. Its caused by a deficiency of an enzyme which causes the adrenal glands not to produce the hormones
we need to survive.
It can Sometimes also cause Ambiguous genitalia which requires surgical treatment by a urologist. Whilst this is just one aspect of the condition and very worrying for parents due to complications for babies and surgery
it is not the life threatening part of Cah... Adrenal insufficiency is.
So what did the programme focus on?
The way these children could die within 30 minutes of a trauma because
they have no stress hormone?
Or how they could lose their lives to a simple sickness bug or virus?
May be the way that children and adults are dying right now worldwide due to the pathetic medical treatments for adrenal insufficiency?
Or the fact that treatments remain over 50 years old because not one pharmaceutical company can make any cash out of it! Because its so rare?
Or perhaps they concentrated on the fact that someone died just last night! Because
their dr could not be bothered to issue them with the life saving medication every patient should carry. He didn't think she needed it...
Or may be the poor children and adults who lose their lives all of the time because of the poor medications
and lack of awareness.
Or did they speak to a devastated family ? a mother who has lost her child or a child who has lost a mother? NEEDLESSLY ! and generally down to poor awareness, treatment and management of this condition??
ANY OF THESE
POSSIBLE EVERY DAY OCCURANCES OR SITUATIONS????
No F*** No!!
They concentrated on babies ambiguous genitalia!!!.
WTF?? of all of the topics ? What in heavens name is this about? Why does this interest
people? rather than than getting it out there that THESE PEOPLE NEED HELP TO SAVE THEIR LIVES!! Seriously I cannot shout any louder DO WE LIVE IN A SELFISH WORLD OF ASSHOLES???
Today i have seen many threads on many stories from parents who are totally
outraged by the way society focuses on this and not the thing which could kill their child.
So whilst the parents of these kids today feel angry and upset (again), the people who made this programme and the viewers who watched it are carrying on about
their day just fine and no more aware that these kids have a life threatening condition which needs help ... just may be a memory of something that lightly entertained them for half an hour. ITS WEIRD!!! WEIRD!!
Publicity is what it needs to raise awareness
and to shame the world in to doing something about it. WHAT A WASTED OPPORTUNITY!! IF ADRENAL INSUFFICIENCY WAS CONTAGIOUS AND MORE PEOPLE WERE DYING IT WOULD BE ON EVERY HEADLINE IN EVERY NEWSPAPER IN THE WORLD!! AND I bet my life medications research and
awareness would have all of the money chucked at it in the world!! My God I'm furious.
Week after week day after day I post some pretty horrific things on my awareness page. I now cannot count on 2 hands how many children and adults have died since
my daughter was diagnosed 3 years ago. NOT ONCE HAS THE PRESS CONTACTED ME!! NOT f*****g once! But
I put up a post about Disney sending an email to to me saying they are too busy to send Molly a postcard for her birthday
and I have SIX JOURNALISTS contact me in 24 hours.. SIX!!!
See this story would have been great 'poor little sick girl gets dumped by Disney'! no one would give a shit about the poor little sick girl the next day she would just be tomorrows fish and
Its not their fault to be honest they were all very nice. Its just the way society is. This is what sells! I also have many good friends who are journalists. I'm kind of one myself. So I'm not slating them personally BUT JESUS
CHRIST please lets think sometimes.
Lets stop being selfish and think about real people. Why concentrate on something insignificant when the opportunity is there to change peoples lives! to save peoples lives!.
The whole endocrine world
of adrenal insufficiency and what ever condition causes it is practically ignored. What other life threatening condition was ignored?? Imagine someone dying of an asthma attack but the dr / paramedic knows nothing about asthma. This happens frequently with
adrenal insufficiency. The asthma patient needs Ventolin a patient with adrenal insufficiency needs a cortisol injection. both patients would die without this treatment being given and fast.
This needs to change. And for this to change peoples interests
need to change.
I could go on all day about the infuriating television programmes and news stories which are put out there! THIS ISNT YOUR ZOO for watching it is real life !! And Don't get me started on embarrassing bodies!! just stop using peoples
misfortune and insecurities to make cash! .... its weird
As the main inhabitants on the planet earth we all need to help each other be kind and not have this unhealthy obsession with well everything which is.