November 2022
Hereditary Neuropathy & Genetic Testing: Q&A
Last month, FPN welcomed Sami Khella, MD, of Penn Presbyterian Medical Center, and Shawna Feely, MS, LGC, of the University of Iowa Hospitals and Clinics, for a program on hereditary neuropathies and the benefits of genetic testing. During this one-hour webinar, our experts addressed the problems of misdiagnoses and the benefits of getting genetic testing early on, to lead patients down the right path for treatment. The program also addressed the value of genetic counseling for families that are impacted by hereditary diseases.
Following the program, Lindsay Colbert, Executive Director, sat down with Dr. Khella and Ms. Feely to ask some questions that were not addressed during the program. Read more.
Cyclist Continues to Raise Awareness for PN
Last April, FPN friend and supporter, Gregory Maassen embarked on an epic journey: riding an electric bicycle from Washington, DC, to San Francisco. The 54-year-old former executive for an international development agency got the idea for his tour about three years after he was diagnosed with peripheral neuropathy.
Hand-Cooling or Compression Can Relieve PN Onset for Chemotherapy
Limiting blood flow to the hands during chemotherapy administration may reduce the onset of peripheral neuropathy. This approach—known as cryotherapy of hypothermia—uses cold temperatures to limit the circulation of blood to the hands and feet, which reduces the amount of toxic drugs that reach the peripheral nerves.
Tingling Should be Evaluated Rather Than Ignored
The answer to “What causes tingling?” is deceptively short. In most cases, the cause is attributed to blood flow or more likely a neurological impairment, such as the condition of PN. But the kinds of conditions that can lead to those simple causes number in the hundreds, and for that reason, it’s important to get checked out.
Neuropathy in Cancer Survivorship
Do you or a loved one suffer from chemotherapy-induced peripheral neuropathy (CIPN)? Cancer survivors with CIPN and their family members, partners and friends are invited to participate in a research project sponsored by the National Cancer Institute. The goal is to help develop an educational mobile app to teach simple massage therapy techniques to help reduce or prevent the symptoms of CIPN. Learn more at www.cipnstudy.com.
A New Resource!
A new book, “Explaining Neuropathy: Symptoms, Diagnosis and Treatment” has been recently published and is an updated 2022 edition that was previously published as the American Academy of Neurology Quality of Life Guide. The book is written by FPN’s friend, Dr. Norman Latov, for people with peripheral neuropathy and for those that care for them.
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