Exceptional Parent - August 2009 - (Page 36) When We Found Out Our Daughter Had CMT By Herb Beron In a matter-of-fact tone the physician informed us, “The blood test came back positive—your daughter has Charcot-Marie-Tooth disorder, or CMT.” These were the words told to us by our daughter’s physiatrist, or rehabilitation physician—a medical doctor with specialized training in physical medicine, rehabilitation, and pain medicine. W hen we first received his diagnosis, we didn’t really know what to think. What is CMT? Is it life-threatening? Can it be cured? There were so many questions. Looking back, I remember that our heads were spinning and that we didn’t know exactly what to think. On one hand we were scared and saddened to hear that our daughter Julia did indeed have a disease; On the other hand, we were relieved that there was a specific diagnosis for her. For us, this was of utmost importance—as we could now begin to ascend the steep learning curve about her disorder. We voraciously gathered and read as much information about CMT as we could—both on the Internet and in the literature we received from the Charcot-Marie-Tooth Association (CMTA). We had learned of the CMTA by simply searching the web, and they provided us with invaluable patient handbooks and vast amounts of other literature. We came to learn that CMT is the most commonly inherited peripheral neuropathy, estimated to affect one in every 2,500 people, approximately 2.6 million people worldwide. CMT is a progressive disorder that causes the nerve cells leading to the body’s extremities to slowly degenerate resulting in the loss of normal use of the feet/legs and hands/arms. It may also lead to a loss of sensory nerve function and deformities. CMT strikes people of all ages, genders, races, and ethnicities. The symptoms of CMT can range from relatively mild to serious, requiring a wheelchair or even a respirator. Through the CMTA, we learned of the many professionals who were leading the worldwide diagnostic and research efforts, namely Dr. Shy in Detroit and Dr. Scherer in Philadelphia. We eventually took Julia to meet Dr. Shy and his team at the CMT Clinic at Wayne State University in Detroit. Julia had developed physically later than most children, not walking until after her second birthday. After a year of in-home physical therapy, we were strongly encouraged to take Julia to a prominent local physiatrist. We had received SO many different opinions from our various doctors, and we really felt that we needed to put our trust in one whom we could depend upon to help us “quarterback” her therapy/treatment schedule. It 36 August 2009 • EP MAGAZINE/www.eparent.com http://www.eparent.com Table of Contents for the Digital Edition of Exceptional Parent - August 2009 Exceptional Parent - August 2009 Contents Ancora Imparo What's Happening Further Reading New Products 2009 Disability Awareness Night Schedule 2009 Models of Excellence in the Healthcare Profession Preterm Birth: How It Affected My Family Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children Federal Program Encourages Health Service Innovations on Developmental Disabilities Close Encounters of the Medical Kind Sitting on top of the World: One Physician's Journey to Success Raising a Noonan Syndrome Child When We Found Out Our Daughter Had CMT August is Spinal Muscular Atrophy Awareness Month! Newborn Screening Saves Babies, One Foot at a Time Another Day in the Life of the National Children's Study Evidence Based Humanity Must Be Part of the Equation Incontinence Education Series Part 7 Emergency Preparedness Series Part 4 On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions EP Bookstore Special Needs Alliance Specialcare AADMD - American Academy of Developmental Medicine and Dentistry Organizational Spotlight Living with a Disability Exceptional Parent - August 2009 Exceptional Parent - August 2009 - Exceptional Parent - August 2009 (Page Cover1) Exceptional Parent - August 2009 - Exceptional Parent - August 2009 (Page Cover2) Exceptional Parent - August 2009 - Exceptional Parent - August 2009 (Page 1) Exceptional Parent - August 2009 - Contents (Page 2) Exceptional Parent - August 2009 - Contents (Page 3) Exceptional Parent - August 2009 - Contents (Page 4) Exceptional Parent - August 2009 - Contents (Page 5) Exceptional Parent - August 2009 - Ancora Imparo (Page 6) Exceptional Parent - August 2009 - Ancora Imparo (Page 7) Exceptional Parent - August 2009 - Ancora Imparo (Page 8) Exceptional Parent - August 2009 - Ancora Imparo (Page 9) Exceptional Parent - August 2009 - What's Happening (Page 10) Exceptional Parent - August 2009 - What's Happening (Page 11) Exceptional Parent - August 2009 - Further Reading (Page 12) Exceptional Parent - August 2009 - Further Reading (Page 13) Exceptional Parent - August 2009 - New Products (Page 14) Exceptional Parent - August 2009 - New Products (Page 15) Exceptional Parent - August 2009 - New Products (Page 16) Exceptional Parent - August 2009 - 2009 Disability Awareness Night Schedule (Page 17) Exceptional Parent - August 2009 - 2009 Models of Excellence in the Healthcare Profession (Page 18) Exceptional Parent - August 2009 - 2009 Models of Excellence in the Healthcare Profession (Page 19) Exceptional Parent - August 2009 - Preterm Birth: How It Affected My Family (Page 20) Exceptional Parent - August 2009 - Preterm Birth: How It Affected My Family (Page 21) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 22) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 23) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 24) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 25) Exceptional Parent - August 2009 - Federal Program Encourages Health Service Innovations on Developmental Disabilities (Page 26) Exceptional Parent - August 2009 - Federal Program Encourages Health Service Innovations on Developmental Disabilities (Page 27) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 28) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 29) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 30) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 31) Exceptional Parent - August 2009 - Sitting on top of the World: One Physician's Journey to Success (Page 32) Exceptional Parent - August 2009 - Sitting on top of the World: One Physician's Journey to Success (Page 33) Exceptional Parent - August 2009 - Raising a Noonan Syndrome Child (Page 34) Exceptional Parent - August 2009 - Raising a Noonan Syndrome Child (Page 35) Exceptional Parent - August 2009 - When We Found Out Our Daughter Had CMT (Page 36) Exceptional Parent - August 2009 - When We Found Out Our Daughter Had CMT (Page 37) Exceptional Parent - August 2009 - August is Spinal Muscular Atrophy Awareness Month! (Page 38) Exceptional Parent - August 2009 - Newborn Screening Saves Babies, One Foot at a Time (Page 39) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 40) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 41) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 42) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 43) Exceptional Parent - August 2009 - Evidence Based Humanity Must Be Part of the Equation (Page 44) Exceptional Parent - August 2009 - Evidence Based Humanity Must Be Part of the Equation (Page 45) Exceptional Parent - August 2009 - Incontinence Education Series Part 7 (Page 46) Exceptional Parent - August 2009 - Incontinence Education Series Part 7 (Page 47) Exceptional Parent - August 2009 - Incontinence Education Series Part 7 (Page 48) Exceptional Parent - August 2009 - Emergency Preparedness Series Part 4 (Page 49) Exceptional Parent - August 2009 - Emergency Preparedness Series Part 4 (Page 50) Exceptional Parent - August 2009 - Emergency Preparedness Series Part 4 (Page 51) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 52) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 53) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 54) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 55) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 56) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 57) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 58) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 59) Exceptional Parent - August 2009 - EP Bookstore (Page 60) Exceptional Parent - August 2009 - EP Bookstore (Page 61) Exceptional Parent - August 2009 - Special Needs Alliance (Page 62) Exceptional Parent - August 2009 - Special Needs Alliance (Page 63) Exceptional Parent - August 2009 - Specialcare (Page 64) Exceptional Parent - August 2009 - Specialcare (Page 65) Exceptional Parent - August 2009 - Specialcare (Page 66) Exceptional Parent - August 2009 - Specialcare (Page 67) Exceptional Parent - August 2009 - AADMD - American Academy of Developmental Medicine and Dentistry (Page 68) Exceptional Parent - August 2009 - AADMD - American Academy of Developmental Medicine and Dentistry (Page 69) Exceptional Parent - August 2009 - AADMD - American Academy of Developmental Medicine and Dentistry (Page 70) Exceptional Parent - August 2009 - Organizational Spotlight (Page 71) Exceptional Parent - August 2009 - Organizational Spotlight (Page 72) Exceptional Parent - August 2009 - Organizational Spotlight (Page 73) Exceptional Parent - August 2009 - Living with a Disability (Page 74) Exceptional Parent - August 2009 - Living with a Disability (Page Cover3) Exceptional Parent - August 2009 - Living with a Disability (Page Cover4) http://www.eparentdigital.com/nxtbooks/exceptionalparent/201009 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201008 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201007 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201006 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201005 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201004 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201003 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201002 http://www.eparentdigital.com/nxtbooks/exceptionalparent/2010rg http://www.eparentdigital.com/nxtbooks/exceptionalparent/200912 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200911 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200910 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200909 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200908 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200907 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200906 http://www.nxtbookMEDIA.com
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