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Rare Disease

"My name is Lauren Deluca and I am a rare disease advocate. After a life threatening medical emergency was mishandled, I was left suffering untreated with Superior Mesenteric Artery Syndrome. It is a rare disease which causes the duodenum and intestinal track to become clamped shut resulting in debilitating pain and the inability to eat. Rather than receiving compassionate care, I was met with suspicion and accused of drug seeking rather than being treated like a person in need of medical assistance. After being denied care, neglected, and abused, I set off to create the now, "Chronic Illness Advocacy & Awareness Group”, better known as @CIAAGOfficial. Our organization is a place for patients to be able to speak out about the abuses taking place within the medical system due to the so-called opioid crisis. In the course of advocating for myself, I discovered that millions of individuals suffering from rare diseases and incurable conditions were being force tapered off their opioid medications to satisfy the will of the political body, while sacrificing compassion and basic human rights. Through our advocacy, we educate the community and policymakers on the differences between safe, effective use of opioid medications versus the abuse of illicit drugs. In a time where our country is moving toward social acceptance of each others differences, we have created a system that engages in extreme discrimination against the sickest and most vulnerable citizens. I now dedicate my life to helping others and teaching the truth about the changes taking place in our medical system that effect our care, while helping to break the stigma against individuals who need opioid medications to manage their incurable illnesses/conditions. We all deserve compassionate care in our time of need and through our organization, we are changing hearts and minds one person at at time.” @ciaagofficial 

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