This website is intended for a European audience and is made available by Amgen.
This website is intended for a European audience and is made available by Amgen.
The journey to diagnosis for someone with a disease as rare as NMOSD is normally quite long and painful. You visit multiple hospitals, doctors and specialists while your condition rapidly deteriorates. You are dealing with the unknown, and that’s very scary. I remember feeling very lonely and isolated.
My journey to diagnosis took around four years. In these four years, I experienced multiple symptoms relating to NMOSD including persisting nausea, vomiting, constant hiccups. I was diagnosed with area postrema syndrome (APS) which was followed by optic neuritis, and even an incorrect multiple sclerosis diagnosis. In April 2017, I experienced my latest relapse which caused my sight loss. This is when I was finally diagnosed with NMOSD.
I wasn’t ready to hear about this new rare disease. It was a strange feeling of relief, given that I had finally received a diagnosis but I had also lost my vision and so I experienced real darkness – the darkness caused by NMOSD but also the darkness caused by this long journey to diagnosis and the lack of information and knowledge about the disease. But it didn’t have to be that way…
I am not someone who gives up and so I wasn’t going to give up this time. What I went through was already in the past but what I could do is focus on the future. I couldn’t imagine anyone experiencing a journey as challenging as mine and so I decided to speak up, share my experiences and educate patients on what I knew about the disease. Given that I had already lost my job due to the new diagnosis, I felt like I have no other choice but to dedicate myself to helping others and so I established a non-profit patient organisation with a focus on supporting patients and improving disease awareness.
NMO France is all about them. It’s not mine, it’s theirs. It is a safe space where we work together, share our experiences and learn from each other’s journeys.
Educating patients on how to self-advocate is a massive job and a huge responsibility. When you’re faced with the unknown, it’s natural to feel anxious and scared, and lose sight of your goals which in this case is to get appropriate care and attention. I know I certainly felt that way and I found it hard to constantly bang on doors and ask for help but there was no other way.
I speak to patients daily and the most common questions I get are about how to speak to their doctors and whether they should discuss their ongoing symptoms. It’s heartbreaking to see how lost, isolated and lonely people can feel when faced with such a ‘puzzle’; NMOSD is so complex, piecing it all together can take months, and even years. It is an ongoing process. It is a chronic disease which means that process never ends.
Last week, I spoke to a patient for an hour and a half. She was very anxious and needed advice, so I asked her to write down all the questions she needed to ask her doctor and to make sure she writes down all the answers during the appointment. I also told her to make sure she has all her medical history with her, and she reports on all her symptoms, big or small, as accurately as possible.
Meeting doctors and having to report on your symptoms all the time can be an overwhelming process. This is why it is important to have the right tools to manage these as best as you can so you can get the most appropriate care.
While there is still a lot more that needs to be done to improve awareness amongst doctors and patients about NMOSD, there are things that you can take into your own hands.
