Today, we’re joining the National Organization for Rare Disorders (NORD) to help raise awareness for Rare Disease Day. In recognition of the day, we recently interviewed Gracie, a valued member of our Devic’s Neuromyelitis Optica (NMO) community.
Devic’s NMO is a rare autoimmune inflammatory disorder which affects the optic nerve and spinal cord and is often confused with Multiple Sclerosis (MS). Compared with MS, Devic’s brain lesions affect different parts of the nerve cell, spinal lesions are larger, and relapses occur in a different pattern.
Here’s what Gracie had to say to our community moderator, Aaron Fleishman:
|(Aaron) When were you diagnosed with Devic’s NMO? What was that like?
|(Gracie) In the spring of 2005, after a few months time of being hospitalized and misdiagnosed and doing a stint in rehab, I was definitively diagnosed with NMO via the Mayo clinic’s NMO IgG test. Fortunately (or unfortunately, depending on one’s viewpoint), I was already fully aware of the implications of having the disease. During the period of time that I was in rehab, I used their computers to research Idiopathic Transverse Myelitis, which is what I was originally diagnosed with. While reading at the site of one of the more prominent U.S. teaching and researching facilities, I came across NMO. I can vividly remember saying to myself: Thank God that I don’t have that. It could have been so much worse. I felt extremely thankful to have dodged that particular bullet.Less than two months later, I was back in the hospital with another acute attack. This time, the paralysis had spread to mid chest, and I knew then that it was unlikely to be Idiopathic Transverse Myelitis. While in rehab, my physician had told me that most cases of TM were monophasic, and that the best thing that I could do for myself would be to learn to cope with my deficits and move on. During the second long hospitalization, I did not respond to IV SoluMedrol, so underwent a course of rescue plasmapheresis. It was at that time that my current neuro submitted my serum to the Mayo Clinic for the NMO IgG test. Actually, in my heart of hearts I already knew what the result would be. It came back positive. What was it like? It was like being hit in the chest with a sledgehammer.|
|(Aaron) You’re one of the founding members of our Devic’s community, and a 3-star contributor. How has being a member of PatientsLikeMe helped you?
|(Gracie) PatientsLikeMe is a unique site. The singular most important function is the data sharing. Researchers, studies, and clinical trials inform us as to how a particular drug or treatment will theoretically affect the disease process. PatientsLikeMe offers the opportunity for patients to see how a particular treatment or medication works in the patient community, without the controls and structures of a clinical study. I have not found another site on the Web, that has the graphing capabilities that PatientsLikeMe offers. Most sites, including my own, are Forums, but offer no capabilities beyond that format. I was thrilled whenever Paul Wicks gave me the news that NMO would be included among the [PatientsLikeMe] communities.|
|(Aaron) Today is Rare Disease Day. Do you have a message for people with Devic’s (or those with other rare life-changing conditions)?
|(Gracie) The most important thing that an individual diagnosed with Devic’s NMO can do for themselve, is to seek out a neurologist who is not only familiar with the disease, but has treated cases as well. Although it is being diagnosed more frequently with the advent of better clinical imaging and the Mayo Clinic’s NMO IgG test, it is still extremely rare and the majority of neurologists have not seen or treated a case. I’m one of the lucky ones. I was diagnosed at a large teaching and research facility and have an excellent neurologist. Many patients are not so lucky.|
|(Aaron) Have you heard of the Accelerated Cure Project Repository? What does it mean for people with Devic’s?
|(Gracie) The Accelerated Cure Project is an amazing organization. Currently they are working in tandem with the Guthy-Jackson Charitable Foundation and are compiling an NMO data and samples repository. They have done everything possible to facilitate the process, including sending a traveling nurse to the home of the patient to procure the samples. Although I have not participated yet, I fully plan to. Without data and samples, there can be no research and without research, there can be no progress. The majority of us within the NMO community are willing to do anything that we can to facilitate research. I’m so thankful for the effort of the Accelerated Cure Project.|
|(Aaron) We’re thankful too, Gracie. And we’re thankful for all that you share every day with patients like you.
To learn more about the rare disease communities on PatientsLikeMe, including Devic’s, Progressive Supranuclear Palsy (PSP) and Multiple System Atrophy (MSA), please visit www.patientslikeme.com.