keratoconus – a mum’s view

It’s just how a mum feels…..

I don’t unfortunately have Keratoconus, I guess you wonder why I am saying that, the reason is simple….perhaps if I had it my beautiful gorgeous son wouldn’t or at least I would then know how he feels. I know the link isn’t proven to be hereditary but it makes you wonder, as a parent.

My son is the typical ‘wild child’ teenager. School was never easy for him, and we could never really be sure what each day would bring! Three years ago we were fast approaching the really tough age of 16. We had promised to buy his a scooter for his birthday. He had chosen a really nice Vespa and there it sat just waiting for his birthday to come along so he could take his CBT test on his birthday.

I dropped him at the test centre, thought nothing of it, other than I would pick him up in couple and then my real teenage boy worries would start. Bang! He failed the test….he couldn’t see well enough to read a number plate. I took him straight to opticians after all it must be something simple…but it is his sixteenth birthday and the optician is telling us he has something called ‘keratoconus’ !?

What the hell is that, I had never heard of it, she explained to us but unfortunately was scaring us even more as her explanation was very clinical and didn’t answer any of our questions. She was talking about ‘hospital referrals’ and ‘end stage transplant’ … I was by this time trying to keep a lid on my emotions for my son’s sake… I was scared. Next I tried our GP…horrified to learn he didn’t even know what it was!

Months later after two different hospitals and various doctors, we finally end at Moorfields. Obviously lots of internet searching in this time had been done by myself…..and things do finally start to make sense.

I remember the first time travelling to Moorfields was a daunting journey made by train, neither of us spoke and he was beyond nervous, I was trying my hardest to hold it together for both of us, it took every ounce of strength I had to get on the train that day.

Nearly three years later, I look back at journey we have made together. My son couldn’t really follow the career he wanted for various reasons some of which were because of his eyesight. But he is making a living, and he is still my son that loves to party, he just gets on with things. He has had very dark times because of the uncertainty of Keratoconus, but generally he is fine.

Me… well I am still the mum who blames herself for missing the signs earlier, I still the mum that worries about what the future holds, I’m still the mum that has a bloody good cry just every now again because like every mum I want my children be healthy and happy and   I am  still the mum that toughs it out every day and never lets my soon see that it kills me that I possible gave him the stupid gene that caused this horrible cruel disease.
He not been offered anything yet other than regular checkups and  he is scared to wear contact lenses so manages with glasses at moment, which I know is not ideal. Unfortunately with kc as you well know because people can’t see you have something wrong with you they assume it can’t be much at all and you making fuss about nothing. We have an appointment in December and we are going to look into all the options available for my son so that he can get sorted out and carry on with his life.

If I could be granted one wish right now…I sure you can guess that one

Karen

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8 thoughts on “keratoconus – a mum’s view

  1. Dear Karen,
    You brought me to tears today. My mom and I just talked about my second transplant this past weekend and I could see all of the things you talk about in your post. You are a good mom, and it’s not your fault. I don’t know how to comfort you or even my own mom but just know that we appreciate it when you, our moms, are the calmness in this roller-coaster life we live.

    Love,

    Anice

  2. My daughter was diagnosed 7 years ago. They too mentioned the bottom line was a transplant. I however thought ‘it will be fine and will never come to that!’ Three weeks ago today my beautiful daughter had her transplant at Moorfields. She has been so brave and positive. I like you have had many tears wishing I could do something to make this disease go away. Unfortunately we all no this will not be the case. She is booked in for Cross Linking mid November to stop progression I her “good” eye. Have comfort Karen knowing your son is being treated at one of the worlds leading eye hospitals. Try not to blame yourself although I know that’s hard. Hope you and your son get on well with any treatment.

  3. Hi Karen I know exactly what you mean – ive got bilateral KC and my daughter has KC too. when I was first diagnosed nobody knew where the KC had come from but when my daughter was diagnosed I knew it had come from me. I felt and still feel soooo guilty. Believe it or not my daughter is the one that comforts me – she says it’s not my fault but I still feel that it is. She says that she is in a better position than I was because she has me who knows exactly what she is going through but still it is not what you want for our child. I try to comfort myself with the fact that there is soo much more available now than when I was diagnosed in 1980. I hope your son gets sorted and he has a lovely supportive mum with him on his journey.

    Kind regards
    Libby

  4. i have keratoconus. il condense as much as can my story. have had corneal graft on both eyes. left eye i developed a catarrach which i had removed. i then developed glaucoma but it was the left eye that was inially affected worse. drops could not control the pressure so i had a trabectoloectomy to help stabilize it, unfortunately the op was unsuccessful resulting in permanent vision loss to the left eye. i managed to plod along for a few years until 2010 when my right eyes pressure became unmanageable and due to me not tolerating most of the drops due to severe allergies this left no alternative but to have another operation my consultant advised me that to do the op i had unsuccessfully in the left eye would not work and with being only eye with sight had he felt didnt want take chance so opted for another procedure. i had an ahmed glaucoma valve inserted dec 2010/ a;; seemed to be going well and tbh still is from the point of view of the valve is doing its job. however last september 9th (my birthday my birthday) not the bed dinner and breakfast had anticipated for my 40th. my vision became suddenly cloudy and it progressively got worse each day that passed even with hourly eye drops of dexamethisone which it was catch 22 using because it helps the cornea but can cause pressure to increase if you have glaucoma. thankfully my pressures remained stable. i was given oral prednisoline and also put on steroid drip for 3 days which all to no avail. i was subsequently re-registered as blind. it totally rocked my world the thought of not seeing my childrens faces. silly things take for granted like flowers, sunsets etc, i retreated inwards.i had lost my dad 1 dec 2011. my family were not speaking to me due to me not seeing my parents for 3 months this was due to ill health and i didnt want to worry them so i became recluse. my dad passed away 2 months after this and my siblings and mum blamed me though he died from angina of the bowel. thankfully my dad spoke to me prior to his demise and told me how proud he was of me and he loved me and understood. i had never ever not seen or not been in contact [rior to this.my husband too was ill and i have a 10, 4 and 3 year olds too. i have two older children from previous marriage 22 and 20.so i guess what i am saying is the lady whos son has keratoconus it IS NOT YOUR FAULT.before me i have not heard of anyone in our family that have had keratoconus diagnosed, perhaps it went back generations but sometimes its the case it starts somewhere thats the way i am looking at it nobody is to blame for me having it.nor is anyone for your son or anyone else suffering from this.the cloudiness in my eye has subsided a bit however some days without warning it totally clouds over again. as the graft started to clear slightly the doctors could see that i have graft rejection and need another one done. my existing graft has lasted 18 yrs approx so no shame to it and i am eternally grateful to the donors and their families for blessing me with these after losing their lives and that of their loved ones. however i have been told its not a straightforward procedure, i know no operation is. however due to the valve it complicates things. i was all booked to go in to get it done about 2 months ago but i decided to put things on hold til i feel a bit more emotionally ready. i guess when is there a good time but for now i get times when the vision is manageable i still need help going out but i worry the op would leave me with no sight because that is a possibility it could make it worse. it may not but great choice heh so meantime il plod along til such times as cloudiness does not shift at all.my ex husband ended his life in july this year so that has been devastating esp for my oldest 2 children who were ours. as a mum i also am terrified that keratoconus will affect any of my children but all i can do is get them checked regular and hopefully this will not be the case. please don`t panic reading this my keratoconus has went to the extremities that does not mean yours will. good luck to you all and you all sound wonderful parents. i dont have that priveledge instead i have been physically and mentally assaulted by mine and my siblings but you know what i dont want or need people in my life like that. i have even been accused of making up my eye problems. so please do not beat yourself up you are good parents simply by being there. good luck and if anyone has had similar to me it would be good to hear because i really dont know what to do. thanks

  5. p.s i meant to add to my last comment that whilst i was in the hospital i tried to turn my negative feelings into positive ones. i could not read which drove me mad because i love reading, so i started to write little poems about my feelings at the time. i also started listening to classic fm on the radio which relaxed me. and i also had not really listened to it before and now i like the instrumental stuff. i am quite a determined person and try to plod on the best i can and i really am trying not to think of the potential maybe outcome, il deal with if it happens.i use the pc but have to have it magnified into huge letters but its better than no letters.

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