Travelling with an illness… Happy rare disease day!

rarediseaseday

Hello everyone,

This is slightly personal and I wasn’t sure if I should post this at first but, after realizing that today was a special day, I couldn’t help but put this blog post together. 29th February is Rare Disease Day,Β an annual event which provides the rare disease community across the world the opportunity to increase awareness of rare diseases and highlight them as a public health priority to government departments. I actually have quite a rare condition which does impact my life, particularly as an avid traveller! Here’s my story…

When I was 18 I started to become poorly. I was being sick, weirdly leaking from my breasts, having severe headaches and generally feeling very tired, faint and dizzy. It took all of my energy to just do even the smallest of tasks. After endless tests, prods and trips to the doctors an MRI scan on my brain showed a small growth and I was finally diagnosed with a microprolactinoma. Put simply, a microprolactinoma is a benign, pea sized tumor on the pituitary gland in the brain which causes an imbalance of the hormone prolactin in the body. At first I was completely terrified, hearing the words ‘brain’ and ‘tumor’ in the same sentence was overwhelming and I was upset, confused and scared. I had no idea what a microprolactinoma was, and a Google search was filled with forums of other women, and even men, discussing how the condition had impacted upon their lives.

The thing that jumped out at me most was the subject of fertility, and the problems that a prolactinoma can cause. In many cases the hormones produced by a prolactinoma make it difficult for women to conceive, and this is something I really struggled to comprehend. Anyone that knows me will know how much I love children and that the only thing I’ve ever really wanted to do in life is be a mum. The thought that I may never achieve what I’ve always dreamt about is completely crushing, but I know there are other options available and many women have gone on to have children despite suffering with a prolactinoma.

Nowadays my life consists of regular doctors appointments, 3monthly blood tests, 6 monthly hospital appointments with my consultant, occasional MRI scans and 9monthly appointments at the eye hospital to check the tumor isn’t pressing on the back of my optic nerves. It’s been almost 5 years since I was diagnosed. At first I was told I’d be on tablets for life, but earlier on this year I came off them for the first time since 2011 as my consultant wanted to see how my body would react without relying on the tablets. I was feeling really healthy and doctors were pleased with my progress.

Unfortunately, just before Christmas last year I started becoming unwell again and symptoms from my initial diagnosis were coming back. My headaches were getting worse and I was feeling similar to the way I felt right at the start of my illness. In November I was advised to go back on my medication after blood tests confirmed my prolactin levels had increasedΒ significantly. I’ve been on the tablets since then and my next check up is mid March so hopefully there will be a slight improvement and I’ll start feeling better soon!

 

Back in October I ran a fun run for The Pituitary Foundation, a charity who have been incredibly supportive of my condition over the past 5 years. I managed to raise over Β£300 for the charity and you can donate to my JustGiving page at any time – better late than never! You can also donate directly to Pituitary’s RareΒ Disease Day as well.

I suppose what I’m really trying to say is, even if you have an illness or a medical condition, DON’T let it limit your life! Make the most of every single day we have on this beautiful planet and, if you travel a lot like me you can still live your life to the full and do whatever the hell you want (within reason!) Although my symptoms affect me daily and my appointments limit me to the amount of time I can spend out of the country, I know that things could be so much worse and am just thankful that I am being well looked after by the fantastic doctors and consultants at Oxford University Hospitals.

If, like me, you live with a health condition and travel often I’d recommend the following tips on travelling safely:

– don’t over exert yourself or feel like you have to keep up with people, take it easy and take each day as it comes

– remember to take your medication, different routines often bring forgetfulness!

– don’t suffer in silence.. tell someone! Even if you don’t want to go into detail about your illness just inform someone so they can keep an eye on you

– don’t get fed up with your illness, remember that there are millions of people suffering across the world, most probably worse off than you if you’re still able to travel! Keep your chin up and carry on as normal

I also have another condition, a recurring cyst on my ovary which causes me pain every few weeks, but that is a WHOLE other story! So I’ll leave you with this parting line…Β Happy Rare Disease Day people – get out there and grab life with both hands… you’ll regret it if you don’t!

Love Jess x

 

 

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Trackbacks & Pingbacks

  1. […] followed my blog from the beginning you’ll know that I suffer with a rare condition called a prolactinoma, which is a small, benign tumor in my brain. I’m on medication for life and have regular […]

  2. […] to open up to a small number of my new friends in the group and I started talking to them about my medical condition, and how it affects me in day to day life, as well as when I’m travelling. After a few […]

  3. […] anything and I just didn’t know how to pick myself up and feel better. My health worsened, my medical condition was dragging me down, andΒ I really couldn’t see the light at the end of the tunnel, I hit […]

  4. […] hospital check ups are a big part of my life, not because I let my illness defineΒ me, but because I am constantly monitored and I want to see how I’m progressing, […]

  5. […] at the end of the month I decided to share something personal to me as part of National Rare Disease Day which took place on 29th Feb. I’ll keep this brief as the blog post speaks for itself but […]

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