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NMOSD Q+A

How common is NMOSD?
NMOSD is a very rare condition. There are few population-based studies in NMOSD.  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.  It is not possible to catch NMO from another person.  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 or thyroid disease.
You cannot pass on an increased risk of getting NMOSD to your family.
It is not possible to catch NMO 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 mild attacks and can have near complete recovery whilst at the other extreme, some patients can experience vision loss or become paralysed.  When we first discovered the antibodies associated with NMOSD in 2005, prognosis was poor however, we now understand the condition much better and treatment options have greatly improved as has the prognosis and severe residual issues are thankfully much more rare.

How effective is current treatment?
The majority of NMOSD patients are on immunosuppressants with Mycophenolate, Azathioprine and Methotrexate along with steroids being the most popular first line treatment choices.  For a minority of 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 0.5%

How are people affected 5 years post diagnosis?
In an epidemiology study, about half the patients with relapsing NMOSD had significant visual loss (less than 20/200 or 6/60) in at least one eye and/or could not walk due to leg weakness and was reliant on a walking aid such as a walking stick, frame or wheelchair.

However this information was a generalisation drawn from an early study based on patients referred to a major hospital (i.e: they may already have been significantly impaired or had severe disease, and may not be representative of all patients. Furthermore, some patients were not treated. Early treatment may lead to better outcomes.

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?
NMOSD is an uncommon disease. In such diseases clinical studies and trials take a long time. (See section for researchers and collaborators) Such diseases normally go through the stages of:

  • Characterisation of features, identifying natural history and risk factors.
  • Tests that support the diagnosis evolve such as MRI and tests that actually diagnose the condition like NMOSD Immunoglobulin Studies on patients and biopsy materials will need to be done.
  • When a good number of motivated patients and researchers are available, trials that test the effectiveness of the current and new, medications should be undertaken.

Ultimately we hope that rapid, definitive and easily available diagnostic tests and potent drugs with few side effects will develop and early effective treatment will allow a normal life for people with NMOSD.

Is there a link between migraine and NMOSD?
Migraines do not cause NMOSD, but there is some anecdotal reports of patients with NMOSD experiencing migraine like headaches. It is important to remember that headaches and migraine are quite common in the general population.

Are there any dietary considerations/restrictions for people with NMOSD?
A healthy diet with adequate vegetables, fruits, calcium and vitamin D (remember steroids can cause bones to weaken) vitamins and proteins is needed to keep the body fit.  It is often easy to put on weight due to side effects of steroids, and/or lack of exercise.