Inherited diseases like what I have with my eyes, leaves
some people a question of whether or not to have children. From what I can
gather, in my case, there was a 50, 50% chance that my baby could have my eye
condition and 100 percent that he will carry it and his children will be at the
same risk as my child was.
I receive many emails from people telling me they are
worried about having children as the last thing they want is to pass on this
dreadful eye disease. They ask me what should they do? How on earth can I answer
that? It’s certainly not my choice. All I can do is put out there what I did
and my thoughts.
I was told when I was four, or my Mum was, but I was there
to hear, I should never have children. Gosh, how times thankfully have changed.
Doctors I would hope wouldn’t dare do that now. they will give you the risks
and leave it up to you. Now, some people think that people who have diseases
that can be passed on should never have children, and that was my belief. As a child
I knew it was not my gift to have a baby. I did look into adoption, though with
that I know the pain some adoptees go through in life. but I was told because I
was partially sighted, they wouldn’t allow me to adopt. Even though my ex had
perfect eyesight and at the time my sight was really good. I just took that as
another slap in the face and another punishment because I had RP.
An then one day I had the strong urge to have a baby. It was
as if something had been planted inside of my head and heart. I told my Husband
and he was shocked because he knew my views and was quite happy to go along
with whatever I wanted as far as having or not having a child and that I know
is rare. Most people will want a child. And these are the emails I get. The writers
don’t, because they don’t want to pass on their eye condition, but how to tell
their partners that? Not everyone will hang around with the person who has just
announced they are never going to have a baby.
I spoke with my friend and she said by the time your child
is older, there will be a cure. I believed her as there seemed to be advances
at the time. 22 years later, no treatment that will remove this what can be a
crippling disease.
Thank God so far, my Son can see fine. There is always that
doubt in my head though that perhaps he will show signs when he is older. I wished
I had got him checked out when he was a child. But I didn’t and now he’s older
he won’t get his eyes checked. I kind of don’t blame him. But in a way, if he
learns he does have the gene that could make him blind, then he needs to know
now, for his future career.
If he had had had my eye disease, he would be loved as much
as I love him now. but his life would have had its challenges. Finding it
really difficult to work. Not being allowed to drive. Not going out at nights
with his friends, unless of course he would be prepared to learn the white cane
and it took me until I had him to do that. But again, I’m no example. I fought
off the thought of blindness for as long as I could. In fact, I was blind for
three years before I even touched a cane. Head in sand.
I truly believed that my vision would come back. But it didn’t
and it won’t. will it ever? I really don’t know. The older I’m becoming the
more I’m thinking not in my life time. But then I have bursts of some positive
news and then learn they are at least five years off giving this treatment to
humans.
I’m told there are many advances and I read all the time of
what is out there. But in my opinion, too many new things and not enough time
on fixing what they think will work I would rather have quality than quantity.
As I always say, I wish all the brains would get together
and talk about what they have and know. Then surely things would happen much
faster rather than behind closed doors? So many different things going on. Some
will stop people from going blind but not improve their sight. So that
treatment is too late for me. Then there is treatment being researched that
brings back shapes for example but not the faces of loved ones. To see a flower
or a bird, to appreciate the beauty of life. to read a letter that comes
through your door. But then there is a virus that brings cells that have died
back to life. and then what? what else do we see? And it all comes down to money and so
much money. But then scientists say the eyes are the easiest genes to work
with.
Who knows, may be my blogs in five years’ time will be
written in silence? I won’t have to type each letter hearing a robotic mans
voice telling me each letter? I may be able to publish pictures to see colours
before me rather than different shapes of grey’s and blacks as I am doing
today. I may be able to make this page look rather fancy. Sometimes I put blogs
out there and it’s only down to you, who write to tell me that my font has gone
funny, then I have to correct it, as obviously I can’t see the font. And please
don’t ever think that other people will tell me about the font, so if you ever
see my font looking odd, please let me know as it could be that particular day,
only people who are totally blind are reading my blogs so no one has noticed.
Thank goodness I can touch type and every few months I stress
how important this is to learn. If not for touch typing, I’m not sure I would
be able to write using dictation as that doesn’t work well for long documents.
Thank goodness for the software called Jaws that makes my words
speak to me. I can search on Google for new advances for my eye disease and
when I learn of new exciting things, I shall pass them onto you.
Back to having a child if you have an inherited condition.
I worship my Son. There isn’t a day goes by when I wished I had
never had him. What if he had been born partially sighted? He still would be my
beautiful son only the guilt I would feel and I’m sure I would have to be
prepared for the hate that may come my way when my child would be told he can’t
drive like his friends for example and he would have to study really hard,
extra hard if he wants a good job. As people who are blind can’t walk into any
job. I have friends who are so clever and have jobs, but some of them are jobs
that if they could see, no way they would do. They are far more capable to do
better. And I have friends who have huge brains very good qualifications up can’t
get a job. Simply because if the employer is interviewing and two people are
the same but one is sighted the other blind, sadly, the employer will take the person
who can see. Now a note to employers. We as people who have no vision would
work extra hard for you, we are always proving ourselves and to get to work
takes a lot of training. To get around work takes training. So, we do not want
to be changing jobs as often as sighted people may. It won’t cost you, the employer
anything extra to have us working for you. Thank God for the Government scheme
that pays for software etc. so, why not give us a chance to prove to you we
would be the better person for the job? Get to know us, we are like you but
work harder to be excepted. We laugh, we have fun. Just our eyes don’t work. Yes,
you do get people who have additional disabilities, but if we say we are blind
or partially sighted, then, that is what we are.
For those who are wondering whether or not to have a child,
then I would say fast forward a few years. In the child’s playground. Will they
get invited to parties? Yes, if you make friends with parents and not keep away
from them, then they will except your child as for the playground, except that
your child may have more cuts and bruises than a sighted child. We hate it when
our kids hurt, so, expect a lot of hurt. A lot of anger, but loads of love too.
And all the other things that come with having a child. Expect the question
when they get older, why did you give me this condition? Answers could be
because I had so much love to give an wanted to give you the best life and show
you that you can do so much and achieve so much, just you have to learn to do
it in a different way to the norm.
Try to normalise your child’s eye condition. Don’t make them
feel different, as only their eyes are and the mind will follow but what is
planted in the mind will grow to be a weed or a beautiful tree that will
blossom.
I do believe that one day there will be treatment. May be
even a cure. In my life time? Not sure. Doubt it. But as I said, fast forward
five years? I mean, who would have thought that it was possible to have 3D body
parts? Gut bacteria treatment, cure for hepatitis C. Gene therapy to reverse
some cancers and help with vision just to name a few things. Fingerprinting,
every incidence of has a unique fingerprint or identity code and cancer
fingerprinting allows medical staff tamanolide the mutated genes of tumours and
understand how particular cancers will be to different types of treatment.
The bionic eye. I’m not a fan of this. Wires glasses all to
see images. I think I would rather wait to see a little more than shapes and
dots, but when I first went blind, twenty years ago I was so excited as this
was first being talked about. I would never be in the dark. Isn’t it
interesting that now, I would say no to that?
Australia have invented a fantastic new bionic eye and from
what I believe there are no glasses. But an operation as a disc has to be
fitted on the back of the head. Hopefully, small, haha. We don’t want to look
like those old-fashioned satellite dishes.
Faecal transplants, sounds awful but if you read into it, it’s
so interesting the many conditions that this will help with not only that, but
a study has shown that the person who receives the transplant, takes on characteristics
of the Dona such as body shapes and if that person had depression.
Seizure stoppers. Epilepsy is a chronic brain disorder
producing unpredictable seizures that can have a debilitating effect on a
sufferer lifestyle with 50 million people suffering with epilepsy. The fantastic
system works continually monitoring brain waves and when it detects unusual activity,
it emits electrical pulses before a seizure can occur.
Synthetic cells. If these are put into the body, then they
fight cancer cells without damaging healthy tissue.
This sounds great, I wish this was available when I had my cataracts
surgery. Drops that melt the cataract.
Instead of drops I had the operation that involved me being
awake as they cut into my eye removing the lens whilst I was able to talk to
the surgeon. Smile… hand me those drops any day.
The world’s first artificial pancreas. And the removal of certain
things that will remove genes that will make that child very sick. So, one day
soon I am sure the RP gene will also be able to be removed. We have also seen driverless
cars, smart watches, and who would have thought ten years ago, that we would be
able to hold a small object in our hand where we can make phone calls from,
answer and write to people through emails? Print off something, go onto social media,
listen to music, in our case, read a letter, photograph an object and hear what
it is? See how many steps we have done that day and order our food shopping as
well as anything else that we may wish to buy also in this small device, we can
see what the weather is like and how to get somewhere, order take away food and
theatre tickets. Have a train ticket on our phone? Remember not that long ago,
when we had to sit with a desk with a huge screen and underdeck machine just to
get onto the computer? So, I guess when you think like that, then there is
hope. And here are some links.
https://www.news-medical.net/news/20190314/New-therapy-could-help-prolong-useful-vision-and-delay-total-blindness.aspx?fbclid=IwAR1KeVMTVcZ-FSNdzTQ-G8eHgHzBZ_6Z14MM7jESYkNJBKZptgfL_5RCBsk
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