Eye Eye you have what dystrophy?

Vision is one of the most taken for granted, vital senses we have. Living life in total darkness is our worst fear. Most of us are luckily born with full, healthy sight and never think about how truly amazing and important it is to us.
Some people are born with none and never know any different yet live happy fulfilled lives and even get numerous degrees and top jobs.

Some people are born with hereditary eye diseases that until they reach a certain age are not aware of and will cause mild disruption, pain and frustration yet continue to live their lives without anyone noticing or being aware.
Lets face it, if someone is walking round bleeding or with their arm back to front, It's a given there is something wrong. Then there are the silent sufferers of diseases and conditions that nobody can see and may never know you have.

This blog is intended to give you all a little insight and awareness into eye conditions that my partner and two son's have and maybe make people think a little and understand what goes on behind the scenes, how it effects our lives and what they go through each time their condition 'flares up'.

I will try and include as much factual based evidence as I can that I have pulled from the Internet but mainly include our personal experiences. Each sufferer presents symptoms differently than the other.

Get on with It I hear you sigh, that I shall!

Some may never suffer and the disease may lay dormant but could appear at any time.

My husband and 13 year old son suffer from Lattice Corneal Dystrophy. This has 3 types and each type is unique and strikes at different ages. Their unique type is type1.

Type1 in easy to use language, manifests from a mutation in the gene and is hereditary but sometimes skipping a generation, however a family of sufferers will most certainly carry on the gene through many of the generations. (will explain symptoms later on).
My husbands sister has the dystrophy yet her son does not. We are yet to find out if his 3 children have it.

When a sufferer has a detailed eye exam the examiner will see comma-shaped deposits, overlapping dots and branches creating a lattice effect. Over time the lines will grow opaque and more of the stroma (supportive tissue of the epithelial) will be involved. Gradually the cornea will become cloudy and effect vision, reducing the strength and clearness. This disease is bilateral (effects both eyes) and is usually detected before 10 years of age. Although this particular type of dystrophy can occur at any time of life, the condition usually arises in children between the ages of 2 years and 7 years.

 (Information gathered from http://en.wikipedia.org/wiki/Lattice_corneal_dystrophy )

One of the early signs in our son's began from as young as 6 months manifesting in recurrent eye infections and the slightest thing to irritate the eye would result in an abrasion or ulcer. My husband however only presented with symptoms in his very late teens. Our 13 year old son had his first ulcer the week of his 8th birthday confirming the consultants diagnosis.

Our youngest son who is 8 years old has been diagnosed with a different type of dystrophy in his eyes. This is called Map Dot Fingerprint Dystrophy Also known as basement membrane dystrophy (sounds like a band name!). Although he gets regular abrasions on his eye his vision will not be impaired yet he will get more of them and will be extremely painful. He does not get ulcers, and does not need to 'scratch' his eye to get an abrasion, they can and often occur after or during a common cold or general illness. Map dot gets it's name form it's unusual appearance of the cornea during an eye examination. Most often the affected epithelium will have a map-like appearance for example, a large slightly grey outline which looks like a continent on a map. There may also be clusters of opaque dots underneath or close to the map-like patches.

(Information gathered from http://wuphysicians.wustl.edu/page.aspx?pageID=523 )


Any sufferer of a dystrophy is said to have 20 times more sensitivity on their cornea than any non sufferer. I guess this to some degree has made me obsessively protective over them when they  are just playing, or if partaking in sports even in daily life such as school/work.
 
When any of them get an abrasion or ulcer it often leads to a minimum of 3 days off work or school, to a maximum of 7 days. This is dependant on the severity and size of the abrasion or ulcer. Sometimes for a Lattice sufferer it has been known to get both an ulcer and abrasion at the same time resulting in severe pain and discomfort not to mention intolerance to light.

This is very difficult to see as a carer of someone you deeply care for as you cannot take away or alleviate the pain, you have to let it heal and run it's course. Administering treatment can prove difficult and frustrating to children as they not surprisingly, are reluctant to open the affected eye. When our two were both toddlers we had some rather distressing experiences at hospital when staff were asked by an on call ophthalmologist  to 'hold them down' so they could prise their eye open to examine them. This is a rare occurrence let it be known but still tattooed on ours and our children's brains. There have also been occasions when our children have almost been sedated or put under general anaesthetic just so they could be examined. Luckily they now open their eyes however painful to avoid the aforementioned experiences!
A vicious circle ensues as without antibiotic drops or ointment, the ulcer or abrasion cannot heal quickly and without complication. Bacteria will throw a raging party in a damp, dark, closed eye and the police will get involved, it all gets kind of messy It's just not worth the hassle to be honest. Treatment is always needed and on a serious note, essentially within 24 hours of the ulcer or abrasions onset. And this may be a good point to clarify I do not have any of the above which makes me very lucky yet, I am the one with the poorest vison and glasses!

When trying to explain that any of my children or my husband has a 'sore eye' can be difficult as people do not see the long term effects, strain and infringement on our lives or any other sufferers and their loved ones. They can have a 'sore eye' at any time, season, day. They may be regular they may be years apart.
Planning holidays, trips out in the short term future is difficult and always have to check for 'cancellation policies' due to this as they can occur at any time. They can go to bed fine, wake up and 'boom' they cannot open their eye and the pain is intensely persistent. Any new extra curricular group or teams/sports they attend we have to explain to the staff/coach about this and to advise that all care is taken when near their faces. Even in school we have had to make them aware of this and give them print outs of the condition for them to understand, and that they don't look at us like were over protective loons! It can infringe on daily life as watching the TV or the PC monitor, playing games consoles have to me limited and spaced out as the eyes dry out and can invite an abrasion. It has deterred my husband from trips abroad as when one of them gets a 'sore eye' the sufferer and myself are pretty much housebound for up to a week in the dark. Well that would be a pretty boring, waste of time holiday wouldn't it! At least if were a car or train ride away from home we can get free treatment (in the UK) and be in the comfort of our own home.

My husband has said that it's made him appreciate life a little more as he is getting older a flare up takes longer to heal and can leave more scarring on the cornea. And now he appreciates the good things that are free in life a little more like days out, walks, scenery etc. The good news is that his strain has not left too much scarring he can still drive, work do all the things anyone else can do and most probably will continue to do so.

There are immediate treatments such as antibiotic eye drops or ointment then there are more drastic treatments for sight deterioration which include Corneal transplants. These can be done using a 'donor' (sounds macabre but how amazing are the donors for agreeing to save some body's sight!?) or even now there is a man made (plastic) cornea (under research and development as we speak) which make the return of the dystrophy almost impossible as it has no tissue to attach itself to!  And then there is PTK (Phototheraputic Keratectomy) laser treatment ( more detailed information can be found here http://www.eyeresearch.co.uk/ptk.html )
Who knows what the future development of treatment holds!

Day to day prevention has many different forms depending on the individual sufferer. My husband and 13 year old use Lacrilube ointment before bed as it's thick and lubricates the eye for a longer period. Our son also uses Lacrilube once during the day at school to keep his eyes lubricated (what with all that reading etc!) During the day my husband uses Celluvisque single drops in both eyes every couple of hours to keep the eyes moist, and has just started a trial period of Hylo Tears which offer moisture for a longer period.
My 8 year old uses Hylo Tears at night only needing one drop in each eye every night, reducing the need for intervention through the day, which is great for young children!
There are different types of Hylo Tears, ask your ophthalmologist which is best for you. 

If you are a sufferer of, carer/friend/partner of somebody with any of the above please contact me or my husband if you wish to discuss this any further, your not alone!
Though they are rare conditions you do not have to feel isolated, there are plenty of organisations and groups able to offer help, advice and support out there.
And don't forget to ask your ophthalmologist any questions about anything related, they are there to help!

Thank you for taking the time to read this blog :)


 

Coming of age, 30 something and beyond.

Well here I am, here we are, we made it!

You spend your childhood waiting for the next 'big' birthday wishing your tender life away, double figures, teenager, 16th, 18th, 21st then it stops. You don't really like the prospect of delving into real 'adulthood' its daunting and quite frankly depressing. But do we ever truly grow up in our minds? I'd like to hope not but that life makes us re assess the way we do things as we grow older in body to enable us to get through it. 

By now you may have acquired a companion, kids or may still be enjoying (or not) single life. Whichever of these your at Is where your supposed to be whether you like it or not.

So lets say your a parent, you find yourself saying all the things your parents said for example 'put that down, you look with your eyes not your hands' as you clearly ignoring this statement in a shop yourself, looking at something you know you cannot afford yet need to know the price.
Or 'you don't know your born!' What a stupid statement to make when clearly your child is aware they are a living organism as you spend 80% of their day making them wish they were not with all the 'rules and regulations'.
What about this one 'wait till you father gets home' ! Then what? What actually happens once the 'threat' has been made? Usually nothing due to our ageing brain causing us to forget the said threat and reason for it before he does return home.
You have a moment in the midst of all these illogical sayings when you stop, pause and realise "I have become my mother/father"

Then there is the wardrobe situation, when the fashion becomes too revealing at 'our age' or two young, or too uncomfortable. When is the actual cut off point? As your going through your clothing cull of band T-Shirts and  silly quoted ones or the slightly tighter than when you bought them dresses you spot it! There it is staring at you. You don't know when you bought it, where or why but you have it regardless! The 'uniform' item of clothing you acquire in your 30's . . . . . THE ALL WEATHER WATERPROOF WALKING JACKET!
I mean why did we never feel the need to be weather savvy or sensible before our 30's? When did we suddenly decide we needed this item and practically wear it at all times?

There are more serious issues we face and ponder in our 30's such as 'Have I enough money to secure mine/our future?' 'When will I be able to retire? Will we have enough money to retire?' 'What have I done with my life?' 'My bones ache' 'When did I stop being able to run anywhere?' 'My neighbours are possible Aliens with absolutely no degree of socialisation what so ever!' (OK maybe that last one was a slight exaggeration  but you get the idea).

Then it begins, the 'Sunday afternoon' syndrome! Not only do you fall asleep at the drop of a hat (also known as a Nana nap) , you feel it necessary to frequent garden centres and home improvement shops on this day of so called rest. You look at outrageously overpriced products to fill (clutter) your humble abode with, argue with whomever you went with about what colour, size or material and how many of each. You take a frustrating stroll through the Isles several times before finding what you want but don't actually buy anything in case you see it cheaper anywhere else!

And there is the 'drive' out. Not going anywhere in particular just 'having a look'. You used to take your kids to the park, the funfair, the beach. When did looking at a small village and churchyard become an acceptable trip out to children? You battle to stay awake all day and suddenly feel the cloud of Monday morning loom over you dragging you into a mild depression knowing it will all begin again tomorrow! Packing lunch boxes, getting uniforms and clothes ready for the next day, realising there is no milk 5 minutes after the shop shuts early as it's Sunday.

But despite the negative thoughts we persist on having about the day to day drudgery of life we can smile and fill our hearts with the knowledge we have made it this far, we are survivors, winners and amazing human beings.

Thanks for reading!

Elderly.

Working with the elderly is somewhat of a challenge both mentally and physically, you could almost class it as manual labour!
The miles you walk in the care homes, the bending, the moving, the washing, the toileting the feeding, the laughing, the crying, the consoling, the arguing, the loving and the dying.

I chose this career as I have always been a mother hen and started my career at 17 years of age, and cannot see me doing anything else, unless of course I get a lucky break and fulfil my dream of becoming a published writer of course. And unless my Arthritis wins the battle with my body.

Full moon I kid you not turns the old dears into insanely strong, will full, Un co-operative monsters! There is no reasoning with them, they say its blue when it's red, they say it's time to get up when it's 2am; my tip is just go with it, let them win because you sure as hell won't!

Then there is another side that people forget about the elderly generation. They once played as children, they once fell in love, got married had children. They came through the hardest times that have been to date. You wouldn't get today's families surviving on powdered egg and milk!

When I look into their eyes I see a story that needs to be told, an existence that should be acknowledged a wisdom that is far greater than our own. I see the vulnerability, the loneliness, the need for companionship and just 5 minutes of your time to tell that story again.

It makes you stop and think about your own mortality, your life, your achievements, regrets and also your future. What will we do to make our lives worthy of talking about when we are elderly to our younger generations?
My view on this at this present time is how people have rather than evolved, regressed to animals.
We fight, we hate, we disrespect, we push and shove, we rush, we are greedy for more, we don't help but put down, we don't share we take. Is this what civilisation has taught us? It really is becoming a world of 'dog eat dog'.

Look back at when our elderly generation were young. People helped each other, communities pulled together, generations lived together, kid's actually played out! People pulled together and genuinely tried to help. Not these days, it's each to their own, neighbours hardly speak none of this baking cakes for the newcomers in the street.
It saddens me to see this disappointment in their tired eyes, the sorrow that the human race is ruining the world and itself.

The carers famous spoken line 'I won't be a minute!'

That minute can be a literal minute or a very long minute. You get called away, you deal with lots of tasks at once yes, that famous minute is promised by all at some point.
When that minute actually comes round you spend every second of your time with that individual making them feel safe, clean, loved, important and special. You listen to that story again, you honour their dignity with the uppermost respect you listen to what they want and you give your heart to that one person for however long it takes to meet their needs.

It's not an easy job I will admit but It's rewarding, satisfying, humbling and an honour to care for these pillars of community and all life.

They are some body's someone, they are the families glue, they are caring parents, grandparents, siblings and friends.
Yes even the ones who moan on the bus, in the shop, take far too long counting their change at the front of a very long line, walk zigzag in front of you in a busy shopping centre, demand respect when they don't give it (hey they have earned a lifetime of credit for the odd push in and bad manners!) and expect everyone else to move out of the way all of the time.

Take time to listen to them, you could be the only person they speak to all day, all week, you may be the last person they speak to!
Take time to smile next time you see an elderly someone in the street and remember they were once like you and they would give anything to run for that train or bus, to wear heels again, to dance again, to hold a lovers hand again.
This will be you one day feeling vulnerable, weak and Un-noticed. It costs nothing to smile and say hello, to help with the change, to restore their faith in human kindness does it?

Remember ,ring Nana or Grandad! It's well overdue you will make their day.

Thanks for reading.

Adopted?

Your Adopted? Is usually followed with that 'look', you know the one, when you tell someone that your ill or that someone has died, that apologetic look followed with the words 'oh I'm sorry'. Sorry? Why? I'm not! It's nothing to be ashamed of, I didn't give birth to me and give myself away like an unwanted Christmas gift. Although It must have taken my mother a while to decide I didn't fit because I was almost 4 when I was put up for adoption.

Who came up with these terms anyway? 'Put up' like an auction on ebay with a non returnable policy attached.
I guess my story would make good viewing on one of those documentary programmes on terrestrial TV but It's not finished yet!
I met my birth father 7 years ago and his somewhat, all be it warranted, wary family. You see I wasn't quite planned (who is?). I was the result of a whirlwind, get you leg over, pass the time affair that didn't last. I suppose you could look at it as a negative, I see it as a gift of life which has brought me many ups and downs and will continue to do so. The good things to come from this are a plenty including my adoptive family whom I call earth angels. I wouldn't be who I am, where I am, with whom I am or have the children I have if It wasn't for that decision to let someone give me what she couldn't by my birth mother.

Have I met her or do I remember her?
No.
Will I meet her?
No, I have been informed she passed away the year my firstborn was Introduced to this crazy world.
How do I feel about this?
A mixture of feelings really! You go through the usual anger, sorrow, disappointment , blame but once you become a mother/father yourself the feelings change. You understand more, forgive and move forward. I am beginning to think about what it would be like to be face to face to the woman who gave me life, to ask her questions and to touch her skin, see her eyes and listen to her voice. Would I remember her voice if it spoke to me? I have not seen any photographs of her just had descriptions from people who met her, she gave me my short height!
I know things were complicated, I was born 8 weeks early and we were apart for 5 weeks, this caused the bonding process to be put on hold, She was said to have not been able to bond with me and was said to have told people she couldn't love me. Strangely I get this, I understand the whole new baby blues the struggle and hormone tidal wave. I forgive her and I do not resent her or feel anger towards her anymore.

Holding my baby in my arms made me wonder how anyone could give their little miracle of life away but, everyone who does has their personal reasons and the interest of their baby at heart believe it or not.

I searched for my family once I had my second and so far final child. I felt the need to feel complete and that my children deserved to know who they were and where they came from. For some reason, call it 6th sense, I did not wish to search for my mother at this time, just my father.
The decision was not made lightly as there are so many people involved in this messed up situation. Luckily I was supported by all my loved ones and given their blessing to start the difficult journey that still continues to this day.

I won't go into full details as I am toying with the idea of writing a book about it all in the future and don't want to spoil it! Do you think It's a good Idea?

What I will say is that my search for my paternal side was successful, complicated yet worth every tear and every rejection to have them in my life.
I do not have any completely full brothers and sisters but all half. My father had 2 girls (3 including myself) and 2 boys. All from his marriage that was on a separation at my conception.  My birth mother had (up until my adoption is all I know) 7 (including me). The maximum of 2 to any one father. I have never met any of my maternal siblings but that's a journey I have not fully embarked on for many reasons.

You still with me? I know it's tricky!

So I contacted a charity local to myself who helped me to find my father thanks to my filed records from my adoption and beforehand. Exciting and nerve wracking times!
The search wasn't a long one and was successful! And he wanted to get in contact with me, he had been searching for 8 years! This was such a huge step for me and my family to take but I couldn't find him then do nothing so I agreed to writing letters initially then phone calls then meeting!

My father did not know of my existence until I was 2 years old and the CSA contacted him over payment for a daughter (double whammy!). He agreed to my adoption as his marriage had broken down and he felt I would not be welcomed into his family unit and that he could not give me what my adoptive family could alone.

Understandably his children were not all keen to meet me due to the family being broken due to my fathers affair, but somehow the anger and resentment was aimed in my direction not helped by the fact one of my half brothers was terminally ill and they were preparing to grieve. And to add salt to the wound they were told I was brought up by my birth mother and did not realise I was adopted. 
I did get to meet him thankfully and to this day will never forget those precious 24 hours we got to share.

My father and I are still in contact, see each other at least once a year and his children have come to accept me and realise I am not looking for anything from them or my father except to know them and for them to know me.

There is far more to this story but if you want to find out let me know if I should go forth and write the book!

You can follow me on Twitter @Campney and please feel free to add me to your +1 circles.