Guys, it is time to make a stand and to quit waiting around for a miracle. Mitch and other members of the community are doing an incredible job at progressing the movement to find a cure for this, and they need to know they are not alone. There are thousands of men (and probably more) suffering in silence. We need to stand behind them and do our part. I have been suffering from this disease for 9 months and have watched my body and cognition continue to deteriorate in ways that seem to seem to defy biology. I, along with everyone else here, donāt deserve this. I have spoken to men on this forum who had an unbelievable thirst for life. This community is comprised of men who had drive and ambition, who believed in selfless service, uplifting those in need, and fighting and defeating the evil that exists in our society; men who wanted to be real life superheroes and leave their mark on the world; the true modern-day warriors ā WE ARE THOSE MEN AND IT IS TIME FOR US TO RISE. Redefine this pain and make this your purpose. This isnāt just about PFS. This is about every man and woman that has been damaged by pharmaceuticals they were told were safe.
Nobody planned for this to happen to them, but you know what, nobody ever plans on being victims of tragedy. Stephen Hawking didnāt plan on being diagnosed with amyotrophic lateral sclerosis (ALS) in his early twenties; a neurogenerative disease that leads to the complete breakdown and loss of complete physical function until you eventually die (the mean survival time being 2-5 years after diagnosis). He defied the odds and became arguably the most impactful theoretical physicist and cosmologist the world has ever seen. He was literally paralyzed from head to toe for most of his life. At the time of his death at age 76, he was the director of research at the Centre for Theoretical Cosmology at the University of Cambridge. He did not let this extremely rare disease dictate his lifeās outcome.
Doug Lindsay was a college drop out who was bedridden for 11 years starting in his early 20s caused by an unknown disease. He saw specialists from endocrinology, neurology, internal medicine and other specialties. Doctors did not believe him and he was even referred to a psychiatrist. Because of this, he realized he had to take matters into his own hands and began teaching himself about diseases using aging medical textbooks. Through his own studying (while bedridden mind you), he convinced a researcher who believed him, tried repurposing a current drug to cure his debilitating ailment, and eventually diagnosed a disorder that doctors didnāt believe would exist- adrenal medullary hyperplasia. Ultimately, he pioneered a new surgery that cured him. One man did this! He had not have a medical background. This took him 11 years. This is a TedTalk for anyone whoās interested. Iāll link it at the bottom.
John Nash was an American mathematician who had acute paranoid schizophrenia, but lead an incredibly successful career that earned him the Nobel Price in Economics in 1994. His life was covered in the film āA Beautiful Mindā.
These stories and men are not works of fiction. They are true stories and there are many more like these. These men, like us, did not have plans to be suffering from these diseases, but they did not let them stop them. I refuse to let our suffering be in vain.
āIt is our failure to become our perceived ideal that ultimately defines us and makes us unique. Itās not easy, but if you accept your misfortune and handle it right, your perceived failure can become a catalyst for profound re-invention.ā
ā Conan OāBrien
I am going to be reaching out to the National Human Genome Research Institute (NHGRI). They are part of the National Institutes of Health (NIH), the United Statesā medical research agency. My goal is to write a well thought out, persuasive essay discussing Post Finasteride Syndrome and how research into it could potentially revolutionize our understanding of other rare diseases if we can figure out the mechanism behind it. Itās only one step, but the more people who are willing to do these types of things, the faster weāre going to find a cure and get our lives back. Guys, this is our time. As stated above, there are thousands of men and women who have been unbelievably damaged by pharmaceuticals that they were told were safe. This is bigger than just PFS. This is about exposing the whole diseased, corrupt temple we call Big Pharma. Letās do this.
