The Reality Of Neurofibromatosis Type 1, Hydrocephalus, Crohn’s & Anxiety – Guest Post by Megan

Megan’s guest post is the 2nd post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Megan!

Hello everyone! I’m Megan and I’m a 20-year-old lifestyle blogger and university student from Leicester (UK). I’m an advocate for invisible medical conditions/illnesses, living with Neurofibromatosis Type 1, Hydrocephalus and Crohn’s (undergoing diagnosis). I’m also prone to anxiety.

I am extremely lucky in that I am healthy (touch wood) despite these conditions. When you research them, lots of scary answers come up, but I’ll give you a bit of detail about what my experience of them are.

Neurofibromatosis Type 1

NF1 – NF is a genetic condition, mostly known for causing nerve tumours (fibromas) to grow where they shouldn’t. Most people have it very mildly, with NF just affecting the skin, but there are more serious cases too. I was diagnosed when I was very little, with my parents noticing that I had café au lait marks (freckling, a bit like birthmarks) on my body and it has remained that way ever since. I also have freckling on my eyes too.

However, there is research to suggest links between NF and Hydrocephalus, as well as bowel problems like Crohn’s, so although I only have café au lait marks as a direct indicator of NF, it’s possible that the Hydrocephalus and Crohn’s are linked.

Hydrocephalus

Hydrocephalus – Hydrocephalus is a build up of fluid in the brain. Mine is cause y a piece of skin blocking a tube in my brain causing there to be an excessive amount of fluid and it’s likely that I’ve had it since birth.

Believe it or not, I didn’t know I had this until I was 13! I had an MRI scan due to some shoulder pain and we wanted to check there was no fibromas there as a result of the NF1.

A few days later though, I get a call from the hospital, saying that I had to come in and very almost had brain surgery. It was all a communication mix up as the neurosurgery department had heard I’d been having multiple headaches, a potential symptom of hydrocephalus, when in fact I’d had one migraine. Even with hydrocephalus, you still get headaches like everyone else. The symptoms for hydrocephalus are much more severe and let’s just say I’d know if there was a problem!

Crohn’s

Crohn’s – I’m still waiting for this diagnosis to be confirmed with a colonoscopy, but from the scans and talking with the consultant, it’s highly likely that I have Crohn’s, which is a type of inflammatory bowel disease (IBD). It can cause an inflammation of the digestive tract. This was a recent discovery for me.

After having no issues my whole life, in March I was admitted to hospital with severe stomach pains and vomiting. The doctors thought I was having an appendicitis at first, which was why I admitted so quickly, but as it turns out I had inflammation where my small and large intestines meet, which is an extremely common place for Crohn’s.

After 4 days in hospital, I was sent home on antibiotics and am now on the colonoscopy waiting list. When I have the colonoscopy, the doctors will take a tissue sample from the inflamed area which will confirm if it’s Crohn’s, in which case it’s likely I will have to go on long-term medication to control the inflammation. I’ve switched up my diet too since my diagnosis, cutting back on gluten and sugar, as well as eating foods with known anti-inflammatory foods.

Anxiety

Anxiety – The biggest way all of these conditions affect me is from a mental health point of view. Ever since the hydrocephalus diagnosis when I was 13, I have suffered with health anxiety and that led to other forms of anxiety.

When I was 17, my anxiety had a particularly bad phase. I missed several week of school in my A-Level year and struggled socially. My panic attacks got so bad that I was admitted as an inpatient. I’m very lucky that my family and school supported me during this time. I got the help I needed and completed my A Levels that year, getting into my first-choice university.

The experience that I went through was a real wakeup call and I’ve worked hard to control my anxiety ever since. I still have bad days and sometimes I do panic whenever I get a headache or stomach ache, or anything really that can mirror symptoms of my medical conditions.

After the Crohn’s revelation, it’s taken a dip at times. I’ve worked out some strategies though that help me, and I’m determined not to let anxiety get the better of me again.

Being part of the blogging community has helped me too and made me realise that I’m not alone and there are people out there with my conditions who know first-hand how I’m feeling and that has been a great comfort as one of my struggles was thinking no one else understood what I was going through.

My Favourite Superheroes

As for my favourite superheroes? Am I allowed to say my family? I honestly don’t know what I’d do without them.

Thanks Megan for sharing your story with my readers and me!

If you would like to keep up to date with Megan, then you can follow her on her blog, Megan Elizabeth, Instagram, Facebook, Twitter and Pinterest!

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