Type 1 Neurofibromatosis & Life Insurance

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Type 1 Neurofibromatosis & Life InsuranceWe know that neurofibromatosis is unpredictable, you never know when a new tumour will appear, if it will be visible or internal, if it will be uncomfortable or cause mobility issues. Having NF type 1 can be stressful, and it is our job to take away any stress that you may have in arranging your insurances.

Things we need to know:

  • When were you diagnosed with neurofibromatosis type 1 (NF1)?
  • Do you know how many nodules you have?
  • Have you had body imaging scans done?
  • Have you had any neurofibromas removed?
  • How often do your tumours develop?

When you apply for Life Insurance, neurofibromatosis type 1 (NF1) will need to be fully detailed to the insurer. The insurance provider will probably want to see a report from your GP to find out how much the condition affects your general health. The insurer will be interested in whether or not you have secondary conditions e.g. epilepsy, or affected your bone development e.g. scoliosis. It can be helpful if you have had a full body imaging scan to establish how many neurofibromas that you have, but it is not essential.

Older individuals with mild neurofibromatosis type 1, may be able to secure Life Insurance at standard terms. Young adults applying for Life Insurance with neurofibromatosis type 1, could find that cover is accepted at non-standard terms. It is important to find the right insurer for you and your circumstances, to get you the best terms possible.

Critical Illness Cover for people with neurofibromatosis type 1 will also require a report from your doctor, for the insurer to fully assess the application. Applications are reviewed on a case by case basis with factors such as the number of neurofibromas present, number of nodules removed and the speed of tumour development, all affecting the underwriting decision. You may be able to arrange Critical Illness Cover on the standard insurance market, but if there are any issues because of the neurofibromatosis, there are specialist policies that can be applied for instead.

Income Protection for those with neurofibromatosis type 1 may be available with some insurers. A report from your GP will need to be provided to the insurer, detailing the amount of tumours you currently have, the amount that have been removed and how quickly they tend to develop. The terms provided for the Income Protection policy will be highly dependent upon the severity of the neurofibromas that you experience. The insurer will also want to know if your neurofibromatosis has cause you to have anytime off work in the past.


As an alternative to Income Protection people can apply for short term Accident, Sickness and Unemployment policies which will provide quick cover without any medical questions. These policies provide a monthly income replacement for between 12 and 24 months, if you are unable to work due to ill health of redundancy. Please note that these policies often have exclusions for pre-existing conditions, so you will not be able to make a claim for inability to work due to your neurofibromatosis.

Are you planning a holiday? It can often e worthwhile speaking with a specialist travel broker, to make sure that you get the right travel insurance to match your health. Please visit our dedicated travel insurance page for more details here.

Hi, today I’m carrying on the CuraVision ABC Series and I’m going to talk about Miss N.

Naomi came to us having been declined critical illness cover with her bank. She had just arranged a capital and repayment mortgage with her bank of £95,500 over 30 years and due to her health history, they were not able to offer her critical illness cover.

So, Naomi had neurofibromatosis type 1. She had roughly five nodules that she and her doctors were aware of. She hadn’t had the imaging done to see if there was any nodules on her internal organs, so that is something that the insurer did want to factor in, that it hadn’t been fully investigated; and it was something that, it wasn’t affecting her daily living. She was working. She was living a full life. She had a mortgage and she needed that protection in place.

I’m pleased to say that we were able to arrange her a decreasing life and critical illness policy of £95,500 over 30 years, for an approximate monthly premium of £22. The reason that we bolted on the life insurance as well is that the price difference between life and critical illness cover, or just critical illness cover on its own, was negligible; and after speaking with Naomi, she felt it was a good idea too, to put it in there as a just in case for the future.

The other thing that happened as well, was that the insurer said that with the critical illness policy, that side of it, they were not able to offer Naomi cover under their total permanent disability section, their definition of that.

Now again, we spoke to Naomi and we explained that, that condition in itself is extremely difficult to claim on for anyone, and it really shouldn’t detract from all the illnesses that she was still covered for; and she felt that it was still a good policy and we managed to get that in place for her. 

What is Type 1 Neurofibromatosis?

Neurofibromatosis Type 1 can be either a genetic or random development in an individuals gene structure, that causes tumours to develop along the nerves. Tumours may be painful or not, grow quickly or slowly and may be large or small. The condition typically presents itself in children under the age of three.

Also: NF1, Von Recklinghausen’s disease

Linked with: High blood pressurescoliosisstrokes, attention deficit hyperactivity disorder (ADHD), optic pathway glioma (OPG), malignant peripheral nerve sheath tumour (MPNST), brain tumours, epilepsy, osteoporosis, asperger’s

Some potential problems experienced by individuals who have type 1 neurofibromatosis include:

  • Café au lait spots
  • Chronic pain
  • Freckles in the armpit or groin
  • Learning difficulties
  • Loss of vision
  • Low self-esteem
  • Migraines
  • Neurofibromas
  • Vitamin D deficiency
  • Surgical removal of neurofibroma


Common Questions

Yes you can, but it will be limited. Standard life insurance providers will want you to have completed and recovered from the tumour removal surgery, before they offer you cover. This is known as your application for life insurance being refused or postponed. There are specialist life insurance policies that you can put in place, regardless of your upcoming surgery, but it will exclude any claims related to the surgery or your neurofibromatosis.

Yes. Without knowing more about your situation it is difficult to offer you specific advice, but there is definitely things that you can do. If your NF is severe or you are awaiting surgery, then you can apply for Life Insurance with a specialist insurer. If your NF is mild, it could be that you applied for Life Insurance with an insurer that is not great at accepting people with neurofibromatosis. It’s just a case of knowing where to look, based upon your individual needs.

Client Reviews

Cura Financial Services has been rated 5 out of 5 based on 600 reviews.

Review by Andrew on 6th July 2018

Krystle was fantastic throughout and managed to knock almost 50% off my current life insurance premium. - 5 

You can read more of our reviews here.

Type 1 Neurofibromatosis & Life Insurance

Dr Kathryn Knowles Phd

This page was written by Dr Kathryn Knowles Phd, an award-winning insurance adviser. To read more about Kathryn please see her bio here

Type 1 Neurofibromatosis & Life Insurance

Client Reviews

Type 1 Neurofibromatosis & Life Insurance

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