Saturday 2 September 2017

Life Update and Exciting Future Projects!! The POMC Series

Hi again everybody! 
Image from google.com

So, it's been over a week since I made my return to blogging and explained that the focus and style of the blog would shift significantly and oh my gosh the support has been absolutely amazing! I truly cannot thank everybody enough for all of the comments, likes, shares, retweets and such. Most of all I would like to thank everyone who has taken the time to read the posts, to talk about them with their families, I've managed to get in contact with some of you whom have been reading the blog and honestly your stories are so touching and heart-warming. I'm really glad some of the posts have helped you guys and I'm overjoyed that the posts have given some even a slightly better understanding of Pro-opiomelanocortin deficiency disorder! That's the whole purpose of the blog. 

This post will be slightly shorter than usual but I just wanted to give you guys a very quick update on how life has been recently. Therefore, I shall begin with last week, I had been waiting on a phone call from my nurse at Cambridge hospital to find out whether or not I was eligible to take part in a drug trial, last Thursday she called me and turns out that because I only have one gene faulty in one pathway I'm not eligible just yet although she did say that if the drug works well on those with 2 faulty genes and doesn't need any development the tablet should be available to all of those with genetic obesity diseases. I was obviously devastated but that was actually what drove me to get my blog up and running and get so involved with fundraising and awareness raising for this condition; even if someone is not entitled to a drug to help them medically, their lives could be made better if there was more understanding and knowledge in the general public of this disease. 
Obviously you guys know how it went after starting the blog, I developed The POMC Series which is a series including any posts related to POMC and in the first week of blogging I've gained well over 1,000 views, I've connected with some amazing people and managed to do a couple of things I never dreamed I could with this page!

Now, since starting the blog up again a couple of things have happened, both of which I'm extremely excited and hopeful about these two things. First off, after posting the initial post about returning to blogging the President of the University Student's Union and vice president of wellbeing and engagement took and interest in it, who may I say are two of THE most amazing, kindest men I've ever had the true pleasure of meeting, made some absolutely wonderful comments about the blog and was far too kind about me. The president has always made me feel extremely comfortable and welcomed at the university and we met last year on freshers week and had to drag me to get my freshers band I was so nervous! Anyway I approached him after he made the comments and explained what my aim was and how could I work with the university in order to raise awareness and give a friendly face for those who may feel isolated or excluded from others. I had a meeting Tuesday passed which was very emotional and touching for us all I think and we have managed to set out some aims and overarching factors that we want to include or happen. 
Currently, we are scheduling another meeting for  sometime later in the first semester to discuss more ideas as we are hoping to maybe do something around the second semester, this is an extremely exciting turn of events and I'm feeling very confident and determined to carry this on!!

The second exciting thing that's happened is that on one of my posts that was shared by the Student Union president an amazing young woman and journalist has approached me and asked if she could conduct an interview with me about my condition and what has driven me to get to university, this opportunity is so great. I'm aware that this fabulous lady has worked at a number of newspapers and is an exceptionally talented and competent journalist so working with her this Monday is going to be very inspiring and enlightening. She currently writes for the university's newsletter so I will be making sure to ask permission to post that right here, ladies and gents! Keep your eyes open for more information about that. 
So, all in all everybody it's been a bit of a hectic week! I'm so excited to get all of these things underway. To be honest other than those major things all I have been up to is spending time with my friends, spending time with Simon, I had a day out the other day buying all of my stationary for uni which I'm always super happy about! I'm still trying to read the books I got from the Uni library to prepare for the next year (again massively excited about! ONLY 24 MORE DAYS!!), I've been planning, writing and posting blog posts for you all and finally me and Simon are getting ready to head off to York next week for 3 days which will be a long needed break away so I shan't be posting those few days although i will have a lot to post about when we get back!!

Exciting times are a'coming! 
Thanks for reading guys and I'll keep you up to date on everything going on, I'll also be posting a few more POMC related posts so look out for those! 
Have a great day! 
xo











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