Asks the Advocates: NMO and the Next 10 Years
Last updated: January 2022
We asked our advocates what about NMO they hope changes in the next 10 years
Here's what they had to say:
"There are so many things about NMO that I hope change in the next 10 years. The first thing that I hope changes is awareness. While I know that there are many diseases that are unknown, or that have little awareness, this one hits me the most because it’s something that I suffer from. It’s so frustrating to have a flare-up and to go to the hospital and relay that you are having a flare-up and have a doctor or nurse ask what it is that you have. How are you supposed to get adequate treatment if the team that is supposed to support you doesn’t even know about or understand what they are treating?"
"I would also like for more treatment to be available. As someone who is seronegative, the only treatment that I can take is Rituxan. We have come to find out however that I have extreme reactions to the Rituxan, so I must be given additional medication before I have treatment to ensure that I don’t suffer from an anaphylactic reaction. As with many diseases, it can take a long time before the testing will confirm a diagnosis, so your diagnosis may be clinically based on your symptoms. I have experienced symptoms for at least 15 years, and I am testing negative to this day, but my symptoms and sudden loss of vision are what got me my diagnosis. What do I do if the current medication stops working? Can I even really say that it is working since I have suffered a relapse within less than 12 months of starting?"
"10 years is a lot of time for advancements to be made in the medical world, and I really hope that I can tell someone what I suffer from and, at that point, instead of hearing 'what is that?' I receive a response like 'what treatments have you tried?' or I get recommendations to help manage the disease."
"Although NMO will likely remain classified as a rare disease in the next 10 years, I hope NMO will not remain an unheard-of disease by doctors and medical professionals; particularly those who specialize in neurology. As an NMO patient, I know that every moment matters during an NMO attack, so it is my hope that increasing awareness within the medical community will allow patients to be diagnosed promptly and treated immediately during a relapse."
"In 10 years, I hope I no longer hear about patients being misdiagnosed for YEARS of their lives and subsequently treated with incorrect, potentially dangerous medications. I hope in the next 10 years, the days of pleading with doctors to hear me and take me seriously are long gone and far behind me."
"In 10 years’ time, I hope to witness a massive movement towards a deeper understanding of what NMO is and how it operates within the body, leading to new treatment options that are easily accessible, and affordable to all NMO patients. I hope for no more jumping through hoops or insurance delays before receiving treatment! I hope for no more having to choose between which medications I can afford to refill and which medications I must live without."
"I hope that somewhere between now and a decade’s time, I will have finally found a medication that works for me. I hope that relapses become few and far between and that my eyesight will be spared long enough to watch my children grow up."
"I’ve been writing this over and over. Making plans and setting goals is never easy for me, and this question is no different. I try to not dream big because it can lead to disappointment, but today's the day I change that. I’m going to dream big and hope for the best."
"In the next ten years, I hope to see some sort of advancement in being able to reverse the damage that's been done by NMO. The damage that’s done can be endless, but for me, it’s my sight. NMO has taken so much of my vision that I feel it has robbed me of my freedoms. I’m certain every survivor of this nightmare would feel the same. I personally would do or give anything to get even a quarter more of my sight back; to be able to get behind the wheel of a car again and just drive anywhere. That would mean the world to me. If there could be a breakthrough with reversing damage, then I would be pleased! It wouldn't even have to be a full-blown cure for it, just a way to start reversing it. Also after reading this over, I feel crazy, but it’s what I hope to see!"
"In a decade I hope to see many changes when it comes to NMO. The most obvious change is to find the cause and cure for NMO. But to look forward into the future, we must first learn about the past, starting with the discoverers of the disease, Eugène Devic and Fernand Gault. Since the begging of the discovery of NMO, there have been many developments and a whole lot of progress in the world of medicine. With all this new research on NMO, I would like to see more information on both aquaporins positive and negative. and new medicine to help slow or cure NMO."
"In the next 10 years, I hope there will be a more open and expressive culture within our NMO community. As open as I am in my own social media handles (IG: fab_nmo), I can only represent myself and my experience with NMO. I’m a Latina, mother of 2 boys, wife, first-ever diagnosed in my family with NMO, college-educated, and I'm a business owner. My perspectives are very different than others because of where I come from. My point of view of living with this autoimmune disease differs from a child or adult coming from a different background. Our symptoms may be the same, but culturally our disease may be accepted or understood differently. I would like to see more of a positive culture within our community that helps uplift each other without judgment. I'd love for it to be a supportive culture that leans on each other for mental, emotional, and physical support."
"Other changes I would like to see include more educational and mental health services offered to patients, both for the newly and long-ago diagnosed. I'd like them to be dedicated to the diagnosis phase of NMO. Accepting changes in life are difficult, and making sure we the patients stay mentally stable and educated is important for our medical decisions. An educated patient as an empowered patient."
"To think about NMO in 10 years, I would imagine there would be a cure. Now, if I am thinking about this realistically, I know this is not likely the case, however, I do remain optimistic. As a person living with NMO, it is very difficult to get proper treatment from knowledgeable doctors; there are some that can't even pronounce the name of this condition. THIS is what I hope changes. Medical professionals' lack of education on NMO leads to poor quality of life for a lot of us who suffer from the condition. In other words, people's attitude is primarily the problem and what needs to change. We are simply not getting the proper care."
"On more than one occasion, I have had to suffer waiting for answers from doctors that I want to believe care about, but they just don't have any clue how to treat me. Can you imagine the frustration? I hope that doctors can show more care and concern with treating their rare disease patients and take the time to do more research. This way, they can understand what we need. I hope that our concerns can be heard and understood rather than brushed off because they don't understand and even worse, don't want to bother with the 'extra work' that comes with it. We live with this awful condition daily and have become experts at managing our care."
"In 10 years, I'd like to see things the other way around. In my opinion, with a little more effort, research and time, this seems like a clear path to a cure to me."
What do you hope changes about NMO in the next 10 years? Share with us in the comments!
Typically, how much time passes between attacks for you?