Without A Song

Dedication

Dedication

This book is dedicated to those women who live, suffer and fight the fatal disease that is

I'm redrafting the works on Wattpad to bring them in line with the published material. Please feel free to read learn and enjoy them once more. All my writing can be viewed on Wattpad before and after it is published. Rhiw Sider.

. It's also dedicated to the men, women and families who strive to keep them alive amid the search for a cure.

I was searching for a way to kill off my leading female character that I found out about the severe lung disease Lymphangioleiomyomatosis, otherwise known more commonly as LAM. Calling it something else doesn't make the disease any less fatal, just a whole lot easier to pronounce. Delving into the research and history of the disease the facts stunned me. LAM is a rare lung disease that only occurs in women. It doesn't distinguish between colour, creed, country or habitat but it is killing one woman in every million. That's over thirty women in the United Kingdom, a similar number in France. Further away from home it represents fifteen women in Australia and New Zealand, one hundred and fifty women in the United States of America and a possible two thousand in China. Barely a speck in the ocean of life – you will find many more men and women about to lose their own lives on any death row across the world. The difference here is that many women do not know they are sentenced to death. They are the unknowing victims, their lives in the gene pool of the invisible perpetrators. The average age of patients diagnosed with LAM in the United Kingdom is only thirty-four years. That is too young to die. Many women have yet to experience motherhood at thirty-four years of age, let alone die. LAM's a disease that nearly always starts before the menopause but when it is diagnosed later in life, it's usually been found in women who taking hormone replacement therapy drugs. Just as worrying perhaps is that modern diagnosis is finding that in patients with (TSC) LAM occurs in 30–40% of adult females and, so far, only very exceptionally in males and children.

Not all LAM sufferers will die within the same short timescale as I have given my character, but some certainly do. As more and more work is done the survival rates will improve. Meanwhile others will have transplants surviving with a new set of lungs whereas others rely on oxygen bottles hung around their neck, shoulders or waists keeping them alive. Statistics will tell us that many women can and do live for many more years yet many more will die without ever knowing the true cause of their suffering. Their citations will read lung disease but unless you are a research scientist or work at a university hospital I wonder if there will be a LAM specialist anywhere close to explain what you are feeling. LAM has yet to stride across the grand stage, to make hard hitting waves that grab the attention of the world's corporate giants. Many insurers and medical monoliths are so tied up supporting the Big-C that they cannot see that cancer is nothing more than a generic under which many more ills hide and are left undiscovered. Lymphangioleiomyomatosis is one of those minor diseases that has yet to grab global attention by the throat. Is that why we do not hear of the corporate pharmaceuticals sponsoring the requisite investigations, much less offering the critical sponsorships required to save so few members of our society.

Is it a question of monetary return? A large outlay may never see the money recovered in delivering a cure for LAM. It doesn't have to be that way, must not be allowed to continue in this way. Since the end of the last millennium there have been great advances in medical sciences. Many LAM sufferers have raised the consciousness of the world beyond their own, often losing their lives to the cause. Through the use of the worldwide web, social networks broadcast their fight to the world.

It is because of these facts that I'm awake to the continuing need to understand and prevent further suffering in this way that I make this forthright dedication at the front of this book. Without the fantastic efforts of the International LAM Alliance, the LAM Foundation and many others, the world wouldn't be aware of what it needs to do to combat this disease. However for every woman everywhere there's no cure for LAM today, only hope.

Wherever you read this, and I do hope you read this book, I only ask that you learn from it and take the information behind the story much further. If you know of anyone who may suffer from Lymphangioleiomyomatosis and cannot access the correct information, then take what you need from the pages herein.

Many women will have cause to thank you in the future.

Rhiw Sider