THE JUST FOR US COMMUNITY
In 2017 Kelly Ann Gorman was diagnosed with an extremely rare autoimmune disease called NMO (Neuromyelitis Optica). Often times misdiagnosed as Multiple Sclerosis which Kelly was in the beginning. After almost a year of spending countless hours a week researching, scheduling, debating, fighting and showing up she knew something was missing for others suffering with pain. Going through the diagnosis process with numerous doctors she knew right away that she needed to use her voice to be heard and help others going through their own health situations!
Becoming an advocate for your own health and rights became a full time job. And one without any pay and a huge amount of stress! However, speaking up and standing up for yourself and health is an absolute must! Kelly fought through the system, doctors, scans, tests and labs and was extremely lucky to be in the right place at the right time. She was able to come out a winner with the correct diagnosis and finally begin her new journey which would be the path for a life long treatment.
After going through all of this Kelly knew she wanted to create a happy, healthy, positive and productive space for other patients like herself. A place for everyone to share stories and bring awareness to their diseases and illnesses through video and voice. She knew that if she wanted to share her story that there would be others out there that were feeling the same way or others in need of learning more about what a family member or friend may be going through. Others searching for answers from patients actually living through what they have been diagnosed with. Knowing that there is power is numbers and always hope ahead.
The community Kelly created is called JUST FOR US. It is a Facebook page which allows anything and everything health related to be shared and discussed. It is a public and a visible page for a reason! After speaking with other autoimmune and chronic pain sufferers Kelly concluded this...
We want to be seen when sharing our thoughts, emotions and pains. We want to be heard when we voice our frustrations so that we can together bring more awareness to our diseases and illnesses. And while working together we hope to one day find cures for all of us!
For those that prefer to be private about their health rather then public there is a Facebook group as well. The private Just For Us Community was created for anyone going through a tough time in general. Health, heartache or just in need of some happiness. It is a safe place for you to share your feelings, find a few friends and most importantly know that you are not alone!
Creating options was necessary. Especially for anyone going through something health related that needed a place to turn to. A place to meet others. A place to find hope. A place where tears and laughter are appreciated and allowed. A place Just For Us.
For more information on becoming a part of these communities please contact Kelly here.
To join the JUST FOR US COMMUNITY please click on the links below...
To learn more about Kelly's NMO story you may visit the blog post here...
The Guthy-Jackson Charitable Foundation is dedicated to funding research in the quest to understand the pathophysiology and biochemistry of Neuromyelitis Optica (NMO) Spectrum Disorder. Our Foundation is passionate in its support of programs and opportunities aimed at elevating the clinical paradigm for NMO patients and improving options for treatment, prevention, and an eventual cure for this disease.
WHAT IS NMO?
Neuromyelitis optica (NMO) is an uncommon disease syndrome of the central nervous system (CNS) that affects the optic nerves and spinal cord. Individuals with NMO develop optic neuritis, which causes pain in the eye and vision loss, and transverse myelitis, which causes weakness, numbness, and sometimes paralysis of the arms and legs, along with sensory disturbances and loss of bladder and bowel control. NMO leads to loss of myelin, which is a fatty substance that surrounds nerve fibers and helps nerve signals move from cell to cell. The syndrome can also damage nerve fibers and leave areas of broken-down tissue. In the disease process of NMO, for reasons that aren’t yet clear, immune system cells and antibodies attack and destroy myelin cells in the optic nerves and the spinal cord.
THE JUST FOR US COMMUNITY IS GROWING