NMOSD Q+A

How common is NMOSD?
NMOSD is a very rare condition.  In Europe, it is estimated that there is one case of NMOSD for every 100,000 people potentially affecting less than 1000 people in the UK.   NMOSD may be more common in people of Asian and African descent.  NMOSD can affect any age group including children.  NMOSD is predominantly a female disease with a ratio of 8 females:1 male affected

Who is at risk of developing NMOSD?
NMOSD is not hereditary (it is very rarely found in more than one family member). People who inherit a tendency to develop an autoimmune disease are at increased risk of developing another autoimmune disease, such as diabetes, Lupus or thyroid disease.
You cannot pass on an increased risk of getting NMOSD to your family.
It is not possible to catch NMOSD from another person.

Why do some people develop NMOSD?
We do not fully understand the reason why someone develops NMOSD.  As with all autoimmune conditions, the immune system mistakes certain parts of our body and decides it is ‘foreign’ and therefore tries to damage or destroy it.  Sometimes the first episode of an NMOSD attack can be preceded by an episode of flu or other virus or even a vaccine.  It is thought that the immune system may overreact to this and attack the body in error.

How severe can NMOSD be?
Every person is affected differently. Some people only experience one attack or mild attacks and can have near complete recovery whilst others can be left with physical or visual symptoms which can have a significant impact on their lives.  The aims of our service is to assess and treat you quickly and, where we suspect you are at risk of further attacks, treat you to help prevent these happening.  Our understanding NMOSD evolves all the time and from the implementation of the service is 2010, treatment and relapse prevention success have greatly improved.

How effective is current treatment?
The majority of NMOSD patients are on immunosuppressants with Mycophenolate and Azathioprine along with steroids being the most popular first line treatment choices.  For some patients whose relapses are not well controlled on these drugs, the second line treatment options include Rituximab and IVig infusions.  Current treatment reduces the number of relapses to an average of 0.13% (mean average – 1.57% before treatment with 5 year follow up)

Can I still travel abroad with NMOSD?
Providing you have the correct immunisations for the country you are visiting you should be safe to travel. If you are taking immunosuppressive medications you should avoid ‘live’ vaccines such as yellow fever – check with your NMOSD nurses.  Remember to be vigilant for coughs/colds/urine infections whilst away and ensure your travel insurance company are fully aware of any medical conditions.

What does the future hold for NMOSD?
As our knowledge and understanding of this rare condition grows so does our options for treating it.  We constantly adapt treatment based on the individual and carry out a great deal of research at both of our UK centres and are involved with studies worldwide.  You may well be asked to take part in these studies and your help will greatly enhance future care for NMOSD patients.  We are also actively involved with trials of new treatments.  There are three treatments currently in trial for relapse prevention in NMOSD and they are showing promising results.  These drugs are Inebilizumab, Eculizumab and Satralizumab.  Once studies are complete, these drugs will hopefully offer more treatment options for our patients.

Are there any dietary considerations/restrictions for people with NMOSD?
There are no specific requirements from a dietary point of view but eating a  healthy diet is recommended.  See here for our dietary booklet for more information