Support Program Connects PFS Patients Worldwide
SOMERSET, N.J., Sept. 9, 2016 – The Post-Finasteride Syndrome Foundation has launched a program to connect PFS patients with one another for mutual support.
Any PFS patient or family member of a PFS patient who would like to participate should download the PFS Patient Support form, complete it and email it back to PFS Patient Support Program firstname.lastname@example.org.
Due to the urgency of many such requests, the foundation strives to respond to each one within two days.
“One of the tragic hallmarks of PFS is that patients’ health care providers and/or loved ones often don’t believe the condition exists. And even when they do become aware, they have no idea how to help,” said PFS Foundation CEO Dr. John Santmann.
“Over the past year, however, we’ve informally connected hundreds of PFS patients around the globe, most all of whom have let us know how beneficial it’s been to share coping strategies, nutritional tips, exercise regimens and so on,” added Dr. Santmann.
The foundation can also connect family members of PFS patients who have taken their own lives with other family members dealing with the same tragedy. Anyone interested in participating should download the PFS Suicide Support form, complete it and email it back to email@example.com.
Post-finatesteride syndrome (PFS) occurs in men who’ve taken finasteride to treat hair loss, or enlarged prostates. Reported symptoms include: loss of libido, erectile dysfunction, depression, suicidal ideation, anxiety, panic attacks, Peyronie’s disease, penile shrinkage, gynecomastia, muscle atrophy, cognitive impairment, insomnia, severely dry skin and tinnitus. The condition often has a life-altering impact on victims and their families, such as job loss and the breakup of marriages and romantic relationships, while also being linked to suicides.
In March 2015, the U.S. National Institutes of Health listed PFS on its Genetic and Rare Diseases Information Center, noting that “some patients who have taken finasteride have referred to side effects such as sexual dysfunction and depression (sometimes severe)… Studies sponsored by the NIH and other organizations are underway to better understand the effects of 5-alpha reductase inhibitor drugs.”
About the PFS Foundation
Headquartered in Somerset N.J., the Post-Finasteride Syndrome Foundation was established in July 2012 as a 501(c)(3) organization, with private grants from families in the U.S. and abroad. Tax-deductible financial donations to the nonprofit organization can be made via PFSFoundation.org, which also houses patient-recruitment information on active clinical studies, published research, research goals, and media reports about PFS. In July 2015, the PFS Foundation established The Southwest Brain Bank in the Department of Psychiatry at the University of Texas Health Science Center, whose mission is to collect and study postmortem human brain and spinal cord tissue in patients with PFS in order to better understand the pathology and etiology of the condition.
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The Post-Finasteride Syndrome Foundation