Thriving with Neurofibromatosis

For the past 22 months, my wife has been blogging about Thriving with Neurofibromatosis - a genetic condition that creates tumors externally and internally, resulting in a wide range of issues for those who have it. In some, large tumors grown on the outside, causing physical deformations. For others, tumors do their damage on the inside, affecting their spine, vision or hearing. Tumors can be benign or cancerous. The disorder is progressive, leaving its victims in a state of uncertainty throughout their lives, as they wonder how it will manifest in their bodies from day to day.

Neurofibromatosis (NF) is one of the most common genetic disorders in existence, yet one of the least talked about. Those with NF often hide the fact when possible, or if they are unable to hide the effects, hide themselves. It can be inherited, or spontaneously mutate at birth, and it affects 1 in 3000 worldwide.

The Children's Tumor Foundation is devoted to finding a 'cure' for NF - though the only real cure is isolating and altering the gene sequence. They are also searching for effective treatment plans for the many symptoms of the disorder.

Kristi and our three of our children have NF. Rachel may be losing her vision in the next 10 years. Bailey could lose hearing, and significant muscle control in her face. Braden may never reach a point where he is able to live outside the home without adult supervision. The four of them all have the same disorder, but are all affected in very different ways.

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For the last year, and with an intense burst these last three weeks, Kristi has written a biographical account of her life living with NF, and her choice to go beyond living with it, and begin a life of Thriving with NF. She has connected with thousands of people with NF around the world, and hopes to reach out with these words of encouragement for them. Depression is one of the most common factors of this disorder, and is only made worse by NF's unpredictable effects.

Thriving is an option for all of us, whether we have NF, MS, cancer, amputated limbs, or simply hate our lives. What Kristi has learned goes beyond NF, and has changed her outlook completely as she works to create a Thriving attitude within our family, the NF community, and the world around her.

This book has been a labor of love for both of us. I have been focused on helping her get her words on paper the last three weeks, as well as designing, editing, and preparing it for publication, which is why I have not been blogging for the last month. Finishing this book, however, was one of my big goals when I left my last position of employment - so it is a victory for both of us to have it now available for sale.

The book is available now, and will be shipped by mid-December. Click HERE for your copy. NF or no, Thriving is essential to all of us.

As my wife would say - Thrive On!