This Disease Is Both Fatal And Familial

But where there’s determination, hope will tag along.

This is a disease that arrives without fanfare, often when you are looking forward to so many things.

It attacks your mind, starting with having difficulty in sleeping, which quickly turns to having no sleep at all.

Death follows soon after.

It hardly bears thinking about, does it!

This is Sonia’s story…

You are a young graduate lawyer, twenty-seven years old, with the world at your feet. You’re a newly-wed with all the hope of joy that a promising career and marriage might bring. With plans fresh and ambitious, your dreams stretch beyond the horizon.

Can life possibly get better?

Suddenly your world comes crashing down.

You are home for a special family weekend, a healing occasion, because your mother has only recently passed away after a strange illness.

Some days later, when you are about to leave, your father calls you aside. He looks worried and you’re instantly fearful. In a strained voice he tells you that he has just found out that your mother’s death was from a genetic disease called Fatal Familial Insomnia.

Fatal

The word resonates with you.

Familial

This word refers to family.

The connection is immediately made. It can only mean one thing, that your mother’s illness is probably hereditary.

Your father guardedly explains to you that it is possible that you too, may be a carrier of the genetic mutation, a mutation that in time kills people by stealing their ability to sleep, that robs them of memory, and that eventually leads to death at around fifty or so.

But this cannot be! You’re only twenty-seven. You imagined your whole life ahead of you, setting up home, following your career, children, overseas travel…so many plans that are now crushed under the weight of a towering possibility.

The news is a stinging blow.

For a few minutes the room is quiet. It’s difficult to speak, but as internally you process the information, the diagnosis slices into your heart, dagger-deep, and as your father gently puts his arm around you, you weep together.

Just for a moment, try to imagine what you would you do?

It’s such a difficult question to respond to, I realize.

• Would you have wanted to know in the first place?
• Would you choose to fight it in some way?
• Would you see it as some dark cloud hovering over you for the rest of your life?
• Would you prefer to go back to the beginning and rewrite your script? Sorry! That’s not an option.

But might there be a more powerful approach?

What if, the way we choose to react to a situation, could be the catalyst for changing the situation itself, and effecting a better outcome?

‘A strong, positive attitude will create more miracles than any wonder drug.’

After careful consideration, Sonia made the decision to be tested.

Her mother’s death had been a torturous journey for all of them. Her decline lasted almost one year. It seemed that one minute she became forgetful, and dementia quickly set in, leaving the family ill-prepared for its ramifications.

What a frightening experience it must have been. So many events the family was looking forward to, and so many dreams, all sadly cut off. Worse still, so much had died within each of them. And one young woman had just had a life sentence thrust upon her.

But Sonia had her own ideas…

She reasoned that had she not had the test, and had her father not chosen to inform her, she may well have gone on for many years without worrying.

Perhaps they would have had children, children who might also have turned out to be carriers! That notion of that was terrifying!

But now she’d chosen to KNOW — a brave decision, given that the diagnosis could topple so many of her hopes and dreams.

Subsequently she was given the news by her doctor, who explained, “The same change that was found in your mother, was found in you.” and he added that, though research was turning up some positives, as yet there was no cure.

Cold comfort whichever way you look at it!

One can only imagine the grieving period, and most likely a river of tears poured out about the unfairness of it all.

But one day, after much deliberation, Sonia’s thoughts had changed.

She found herself with a coping mechanism, reasoning that, until recently, she was no different to any other young person. She was still on earth, still alive with a promising career, and nothing other than her mother’s diagnosis, had changed.

Leaving all in the lap of of the gods, and enjoying the healthy years she had left, was a possibility. She might never acquire the disease.

But then, she may!

A better option would be to take up the challenge to fight back…and just possibly be the one to win the battle, not just for her, but for all other victims.

The fact is, that we can choose NOT to be victims…

Dr. Bruce Lipton asserts that in fact we need not be victims of our heredity, as new insights suggest that genes are not, as once was thought, in control of the fate of our cells. ‘They are simply blueprints for proteins, the cell’s molecular building blocks’. Genes, he suggests, are activated and controlled by the cell’s response to environmental cues.

Environmental cues are certainly something to think about! It’s comforting to believe that, rather than dictating our fate, the health of our genes could possibly be determined by their surrounding environment, that is:

• the way we in which we think
• the manner in which we act
• how we respond to challenge

The fact is, the traditional genetic notion of disease is now open to question, and could possibly provide better hope for some diseases.

Various cancers, Alzheimer’s, MS, or Parkinson’s are diseases that have been genetically linked in traditional medicine. Essentially the belief was that we become victims of our heredity and as such, must accept, the inevitable.

But could the science of Epigenetics change the theory?

Epigenetics is the science that studies changes in organisms caused by modification of gene expression rather than alteration of the genetic code itself. It suggests that our mind can dramatically alter the chemistry in our blood, and essentially dictate our fate.

‘When the mind perceives that the environment is safe and supportive, the cells are preoccupied with the growth and maintenance of the body.’

Dr. Lipton describes the mind as akin to being the driver of a vehicle, the vehicle being, our body. As such he asserts that with healthy chauffeuring skills in conducting our lives, and in reacting positively with our emotions, in perceiving ourselves in a positive light, we could be able to defy the dictates of sickness and start to live in a sound state of health.

If we can accept that the activity of our genes is constantly undergoing a modification process, and if maintaining a positive outlook is in place, there is every chance that the odds could play out differently for us.

It’s a rather comforting thought. But what about familial support? How might that play out?

As it turned out, Sonia’s husband had his own ideas…

His was a ‘one-in-all-in’ approach. With virtually no scientific background he suggested that they study the disease together. Sure, they had lots of work ahead of them, their plans would be different somewhat, but plans are made to be changed, they’re not set in concrete, and wherever there is life, and determination, there is hope.

It is never too late!

And so, the two left their respective careers, and put in place, plans to study the disease.

Sonia and her husband Eric elected to be right there, in the midst of research.

They have turned their lives around and are now actively engaged as scientists, and as such, they continue their work today.

They recently won a prize in the human prion disease category.

A very tearful Eric on accepting their research award said,

“Early on, I worried people wouldn’t take us seriously, that we’d always be sort of a curiosity, or sideshow.”

They are no passing curiosity, but a curiosity indeed in a world where so many of us might cave in to what we see as, the inevitable.

There’s every chance that these two young people will go down in history as the best, most dedicated, and most brilliant scientists of the 21st century.

What is the lesson here?

They have taught all of us how to brilliantly turn a devastating negative into a huge positive. Strength is what happens when you discount weakness. As self-taught scientists, they are:

• embracing new careers
• staunchly working together
• using the next twenty-five years or so to prove that it’s never too late
• hoping to see results well before then

What an inspirational pair! Will their pathway be strewn with doubt? One would think so. But it’s only in action that doubt can wither and die.

Weakness is little more than a masquerading of doubt. Fortunately there is little room for weakness in this pair’s determination.

Do you see the challenge here for you?

If faced with a life-threatening illness, could you be strong?

Could you find courage?

Might you work on empowering yourself to be the dictator, rather than the victim of your prognosis, to ensure that the outcome might play out differently?

Think about a river and how it cuts through a rock, not because of its power, but by its determined persistence.

Persistence may well be the key for maintaining that positive environment necessary for cellular rejuvenation, and thereby the key to optimal health, despite a contrary diagnosis.

This young couple has determined to dream big, and shrink their fears. There’s no looking back for them. Having turned their backs on negativity, and with lives rich in potential, one would hope they find a solution.

‘Health is a state of complete harmony of the body, mind and spirit. When one is free from physical disabilities and mental distraction, the gates of the soul open.’

I’ll leave you with this last, beautiful, full-of-hope, quote.

‘Nobody can start and make a new beginning, but anyone can start today and make a new ending.’