Sunday, February 13, 2011

A syndrome Not? A syndrome YES, YES?

it will be interesting to see how many open this blog with a title like this one!
Here i am talking about CRS, for the uninitiated, that reads as Congenital Rubella Syndrome.
If people have difficulty still understanding this, believe me I understand.
Think, Post Polio Syndrome here as more have heard of that one.
CRS, as its known in short, is the cluster of conditions and 'defects' that result from a pregnant woman coming into contact with the Virus of German Measles, that is Rubella.  It is a VIRUS, and viruses are nasty little buggers.
CRS is not known much today.
the reason being the disease itself is supposed to have been eradicated so its off the 'disease list' for want of better wording.
it is not eradicated, never will be.  there are cluster outbreaks many times over.
the last before this was in South Africa.
there is not an 'epidemic' in Oslo where five children have got the German measles.  these children are being monitored and all women in their circles have been warned about the dangers of being amongst the children who may or may not have contracted this disease from the kiddies.
the Pregnant women close to them have been asked to stay close to medical personel.
another incident arrived when a woman known to have Rubella travelled by Air on an Emirates plane to New Zealand, and all who were flying with her were notified to watch for symptoms and to stay away from pregnant women.
this virus causes eye, ear, heart conditions at birth, also a myriad of others as the people who are named CRS adults now presenting with the Late manifestation of CRS.
these range from decreasing eye and ear function. a range of mobility difficulties, diabetes, more heart difficulties, hypothyroidism and its endless.
the variations on the theme too are myriad.
anything from being a very bad sleeper.
to finding that no matter how many doctors one travels to, very few can understand the cluster symptoms older adults are presenting with.
some in the USA have travelled to many many neurologists who say, 'i dont know what is wrong, or why you find difficulty walking' and many of these are not up to speed on the virus, indeed never heard of CRS.
who is suffering in this for the want of a blog on it - myself, my twin and my dear friends scattered in the world mainly in America right now.
this condition slowly eats into a person to prevent them carry on a sustainable life, some have no health insurance due to it, so are very very sick and weary, waiting for medaid to come through etc.
the burden on a body and a psyche to deal with this is quite horrendous.
I know.
I was told i was a melingerer, that it was all in the mind and i was simply shown the door - many times, many times my friend.
such things as my twin and i have great great difficulty spelling words, and some of them are very simple words.
last night i was starting an 'expert patient file' so that i own a file with all that is wrong with me, my doctors, diagnosis, medications, visits etc. they do this in UK, the communication between specialists is so bad here, i felt we needed something like this.
i found writing no less than five pages in bullet points was hell for me.  my arm was agony and i found it very difficult to write.
it was the longest piece of writing in many a day.
typing presents less problems.
the day i told my twin, 'you have to walk, you cannot stop walking' has turned its head on myself.
I cannot DO IT anymore, i cannot.  I have been using the scooter more and more, my legs do not carry me and its very difficult, too difficult for in the expending of energy you lose it completely when trying to multitask as in 'enjoying something.'
many with CRS find that 'enjoying something' is hard, very.
you are crammed to the brim of the hair roots with difficulties, curtailed in improvement for us by the economic climate.
Saturday saw me spending E13 for my months medication and my Disability Pension has been slashed twice in the last two budgets and i am in danger of losing some of my services and my twin in danger of receiving none of these services.
this is reality all across Christian Europe and Christian USA.
why do i use the word Christian, in the big C format.
Where are the Christian thinking in say our governments, our closest and many professionals who ridicule, slam and ostrocise for a disease and complexity that DOES exist, has been proven to exist (but only proven in small research areas), and that is because the vaccination programmes were declared fully operational and the desease eradicated.
Nope, wrong, it aint.  not after the scare of the Autism links to the MMR vacine.
now many women are not being vaccinated and also many children are not being vaccinated against the Rubella virus.]
with inter country travel so easy today, from Asia and beyond this virus travels from the coutries who do not have an effective programme to another in the western world whose programme is showing cracks.
such results have proven disastrous for wee babies now entering the world with the complex condition and a life of strife and hardship, no matter which way you look at it.
its hard.  Believe me, its VERY hard.
to do all this alone is near impossible, it IS impossible.
Bite the bullet, get this disease onto the agenda of those who can help or increase awareness in the main populations of its devasting consequences.
Blast many who do not help us, and there are many in many professions.
ask the professionals who BELIEVE us to actually say so in the next referral letter, no you have a 'sick person here, alright'
end of my protest against ill health-mega.
please forward to the Irish politicians and your own who nowadays are the oNLY people who hold sway 'over' peoples lives, forever.

1 comment:

Mary Vallely said...

That is truly awful, Ann. My cousin's daughter, Sarah, is 30 and has had M.E. since she was 13. Her life is so difficult at times and she encounters some of the same problems as those of you with CRS. Keep ploughing away and trying to raise awareness. It is a huge task and you need the patience of Job x10 and stamina( which the condition takes away, of course). Being believed is the fist hurdle to get over but often the most frustrating and most difficult one.In my prayers.They are all I can offer. Keep your sense of humour alive -vital!! Mary