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NMO Q+A

How common is NMO and NMOSD?
NMO is a very rare condition. There are few population-based studies in NMO.  In Europe, it is estimated that there is one case of NMO for every 100,000 people potentially affecting less than 1000 people in theUK.

NMO may be more common in people of Asian and African descent.

NMO can affect any age group.

NMO is predominantly a female disease with a ratio of 4 females:1 male being affected.

Who is at risk of developing NMO?
NMO 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 NMO to your family.
It is not possible to catch NMO from another person.

Are there risks for patients with NMO who wish to have sexual intercourse?
There are no risks of passing this disease through bodily contact to a sexual partner. Also there is no specific risks for a patient with mobility issues in having sexual intercourse, it will not make your NMO worse.

Should an NMO patient consider having/fathering children if there is a risk of passing NMO on to children?
NMO is not passed on in genes. Due to NMO being very rare, numbers of pregnancies within the patient group are low. Therefore this decision has to be made by the patient.

How severe can NMO be?
Every person is affected differently. Some may have only a mild attack of optic neuritis and myelitis with near complete recovery and no further relapses with or without treatment. Some people with NMO may lose vision in both eyes or be paralysed in all four limbs due to damage to the spinal cord in the neck. On rare occasions breathing difficulties requiring artificial ventilation and death can occur due to muscle weakness or involvement of the brainstem.

How are people affected 5 years post diagnosis?
In an epidemiology study, about half the patients with relapsing NMO 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.

Are there any dietary considerations/restrictions for people with NMO?
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.

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

Is there anywhere that can help with filling out of forms, i.e DVLA, living allowance etc?
Citizens Advice Bureau (CAB) are able to help with these forms. We are able to clarify details (i.e. definitions of your disease/physical impairment) and we can be used as referees for DLA reports if needed.

Can immunisation lead to, or exacerbate NMO? Does NMO and immunosuppression restrict my ability to travel abroad, especially in areas where malaria is prevalent?
Providing you have the correct immunisations for the country you are visiting you should be safe to travel. Remember to be vigilant for coughs/colds/urine infections whilst away and ensure your travel insurance company are fully aware of any medical conditions. Be aware that you should speak to your NMO team about immunisations if you have had the drug “Rituximab” in the last 6 months. Please check if the vaccine is a live virus eg yellow fever as there may be restrictions

What does the future hold for NMO?
NMO 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 NMO 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 NMO.