10 Things I Wish People Knew About Neurofibromatosis

Growing up with Neurofibromatosis is harder than it sounds. So here is 10 things I wish people knew about NF.

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1) There are actually 3 different types of NF. Neurofibromatosis Type 1 & 2, & Schwannomatosis.

The difference? NF1 is a common genetic condition. People with NF suffer with it in a variety of ways. Some people may never have complications & lead a normal healthy life, where as others can suffer quite severely. There are around 25,000 people in the UK with NF1. NF2 is a rare genetic condition. With this type, tumors commonly grow in the brain and spine & most people with this type will need some sort of treatment at some point in their lives. There are around 860 in the UK with NF2. Schwannomatosis is a very condition. Problems that can occur overlap with NF1. It is also associated with the growth of a benign tumor called a Schwannoma.

2) Neurofibromas (tumors) aren't cancerous.

Neurofibromas, which are the tumors which grow on the nerves, aren't cancerous. Even though they sound scary & intimidating they are NOT malignant. Although, they can turn cancerous, (sarcoma) that grows from the cells around nerve endings, but this is very rare.

3) Those with NF are not ugly.

Growing up with NF, I was always constantly called names for the random lumps I had on my body. There have been many articles about the appearances of those with NF. Most recently, an episode of the show 'Scream Queens' had featured a man having NF, being absolutely covered in small neurofibromas. A well as the perception of the disease was absolutely ridiculous, it also fueled some cruel words from the viewers.

NF does NOT make a person ugly.

4) NF comes with its friends.

Some people who have NF, also suffer from other conditions, which can also come along with the disease. Some of these can include; learning & behavioral problems, Scoliosis, blood vessel (cardiovascular) problems, loss of vision, and severe pain.

5) NF has no cure.

There are multiple medications, treatments & surgeries that can help things like pain, tumors, and curvatures of the spine, but there is no cure that will prevent the effects of & permanently rid of NF.

6) People with NF can have long lasting mental health issues.

Having NF is not easy. Between social anxiety & self esteem issues, for some, it can be tough, and depression & anxiety can be very common for those with NF.

7) Not everyone is the same.

NF can vary. Not one case of NF is the same. Some go their whole lives without any problems, and sometimes it is so mild - they may not even be aware they have it. On the other hand - some people with NF can suffer so severely, they are faced with life long issues and complications.

8) The future cannot be predicted.

One of the toughest things people with NF have to face is uncertainty. Tumors are able to grow anywhere, at any point, in the body. This cannot be predicted, nor prevented.

9) Common or not common?

NF isn't as 'rare' as it used to be, and more and more general medical professionals are learning about it. But, even though practically 99.9% of the population have absolutely no clue what it is, or that it even exists, it is more common than you think.

10) Not enough research & awareness

NF does not get enough credit as it should. It can sometimes result in being a life threatening illness - and make some lives extremely difficult. Despite NF being diagnosed more and more, there is not enough research being done, and awareness being raised.

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These are just a few personal things I wish people knew about NF. If you suffer from this condition & agree with this blog post, let us know on our social media.

Instagram: @Thrivinthroughlife

Useful websites:

http://www.nfauk.org/

http://www.ctf.org/

- Charlotte

(I do not own any images)