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Charcot-Marie-Tooth 1A (CMT1A) and Impaired Patient Mobility-Expressions, Remedies and Impact on Quality of Life

ISPOR NEW ORLEANS MAY 2019 PERIPHERAL NERVE SOCIETY MEETING JUNE 2019

Conclusion: Patient mobility was the #1 issue for patients with CMT1A; it has significant impact on the multiple aspects of a patient’s QoL. Patient phenotype, like curled toes, pes cavus and muscle atrophy contributes directly to impaired mobility. Patients that do not opt for corrective surgery use multiple modalities to assist with mobility, with bracing and orthotics used by large cohort of patients. Pain and fatigue are also a serious byproduct of patient mobility issues, along with frequent falls

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The Path to Diagnosing Charcot Marie Tooth Disease: The Patient Experience

ISPOR NEW ORLEANS MAY 2019 PERIPHERAL NERVE SOCIETY MEETING JUNE 2019 

Conclusion: Although many CMT patients obtain a confirmed diagnosis of their disease within 12 months of manifesting symptoms, a significant cohort of patients can take several years to obtain an accurate diagnosis. This is particularly prevalent in older patients that manifest symptoms later in life. Given the significant patient population under 20 years of age that are diagnosed, pediatricians were underrepresented in our patient survey as the HCP that first recognized patient symptoms. Although the majority of patients received their diagnosis via genetic testing, cost of testing was noted as a barrier.

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Comparison of the Risks and Benefits of Medical Cannabis in Charcot-Marie-Tooth (CMT) and Hereditary Neuropathy Pressure Palsies (HNPP) versus Chronic Pain Patients

EASTERN PSYCHOLOGICAL CONFERENCE MARCH 2019 PERIPHERAL NERVE SOCIETY MEETING JUNE 2019

Conclusion: The substitution effect is a robust entity. Over three-quarters of Chronic Pain (CP) patients receiving opioids reduced their use and two thirds of patients receiving anti-anxiety, migraine, and sleep medication decreased their use. The biggest concern with Medical Cannabis (MC) may be economic. MC stigma may be an impediment to full-communication with health care providers. Although data collection is ongoing, the self-reported efficacy and limited adverse-effects for MC among CMT is promising.

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