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Real People #3

Real People #3

This month’s story comes from a fellow Stargardt-er from my city. We live on opposite sides of Sydney and as yet have not met in person, but thanks to social media we have been able to connect and be supports for each other.

Mike Lainis, 53, Sydney, Australia

When were you diagnosed with Stargardt’s and how did it
affect you at the time?

My
Journey with Stargardts began 5 years ago in January 2010 When I was 48 years
old.  After loads of testing including blood tests and chest x-rays for TB!
I was sitting in the ophthalmologist surgery blurry eyed from the “drops”
and the numerous flashes of light from the fluorecein
angiograph procedure (they pump you with green fluorescence in your veins
and take photos of your macula all at the same time). She finally turned to me
and said you have a late onset of Stargardts! I thought yes I am seeing stars
at the moment,  Ok…., so my next question was what are you going to do?
Laser, medication or an operation? What ! No cure! Just avoid the sun and Vitamin
A supplements and see you in a year’s time, cheers…..
Wow.
Went home told my wife and family, we climbed on the net for hours researching.
Nothing. No cure or procedure.  I thought surely in this day and age all
diseases have some kind of cure, nope, not this one. For the first three years
it was more of an irritation not been able to do things I had done countless
times before. 
What do you do for work and has the condition impacted you?
Throughout
my life I have worked in the construction industry. I ran my own cabinet
making business, for 10 years, producing some fine solid wood furniture. I slowly
moved up to be a project manager.  I worked in London for 6 years on
upmarket residential apartments in Kensington and Kew Gardens. I worked in
Brisbane for 5 years on the prestigious David Jones Queens Plaza and Chermside
stores. I worked in Sydney for the last 5 years on Hugo Boss, Coach and Thomas
Sabo stores to name a few things I have done. However now I work at my kid’s
school on a casual basis doing maintenance work. A far cry from what I was
doing but I am at peace with that. The school has been very supportive.
What would you say are the defining moments since being
diagnosed?
Late
2013 I had a “near miss” whilst driving. Nearly took out a traffic
officer. Silly man was standing in the middle of an intersection! The traffic
lights had stopped working, and he was directing traffic. I was looking to the
left for other cars coming out of the intersection and did not see him. He was
in my “blind” area of vision. I had to screech the car to a stop
right in front of him. He wasn’t happy with me, had the finger waving. Realizing I
could have killed him I decided my driving days were over.
Then
after last December holidays, maybe after too much fun in the sun, my left
eye, central vision finally all went. After a visit to the ophthalmologist he
declared me “legally blind”. A shock to the emotions as I thought I
still had a few more years to go.
What would you tell someone who is struggling with a vision
impairment?
Being positive is critical in coping with this condition.
When
I was at school I was involved in Scouting. Achieved the highest award (Chief
Scout Award) and went on a Jamboree to America. After school I went into the
army for a couple of years. In later years I was a river guide and then also lead
an expedition to an Malawian Gamepark whilst been a member of the Royal
Geographical Society in London.
During
this time I was taught survival techniques and even ran a few courses myself.
The greatest life lesson I learnt was, when you get lost in the bush or end up
in a life or death situation, it is “the will to survive”. You can
have all the training on how to light a fire or how to find water and food but
if you give up mentally you die. The same with this condition, you can’t let it
take over. You need to fight it each day, develop new skills and ways of
doing things. Accept the situation, you can’t change the fact you are
going or are blind, and then move on with your life.
Lastly
my faith in God has increased dramatically over the last few years.  God
gives me the strength when I am feeling weak. My favourite scripture now is “I
walk by faith not by sight” 2 Corinthians
5 vs 7. Whilst I believe Jesus is able and is willing, for us to be all healed
of all diseases, I believe it is all in God’s timing. There is a purpose and
process to this condition in my life right now, to teach me perseverance and strength
of character. 
My
hope and prayer is that God will give someone the insight and wisdom to find a
cure not only for one person but for all who have this condition. Hopefully one
day I can be part of that process.

Thanks Mike for sharing!


COMMENTS (2)

  1. Unknown April 14, 2015 at 6:11 pm Reply

    Thank You, for your heartfelt story, Mike! I know by your comments, you'll keep fighting…I hope you take comfort in knowing, scientists, doctors, eye hospitals, are in fact diligently working on a cure. In case you missed it, I urge you to view the following post by Chrissy – http://www.stargardtsdisease.blogspot.com/2015/04/latest-news-on-stem-cell-research.html, with regards to the clinicals trials, spearheaded by the renown Dr. Robert Lanza – http://www.robertlanza.com/ & Ocata Therapeutics – https://www.ocata.com/ (Formerly, ACT – Advanced Cell Technology). The highlights of their promising work using RPE – retinal pigment epithelium cells can be found here – http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61376-3/abstract

    Hope you find this info useful & promising…

    God Bless You Mike & Family…

    John Redaelli – twenty2
    https://twitter.com/twenty2John
    http://investorstemcell.com/forum/22-twenty2/

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