Advertisements
  • Local Businesses

    Smergos

    I met Nick & Nicole some time ago through a media event that we were both at, & they then had me over for an interview about invisible illnesses.  I was immediately drawn to their love & passion, & I clicked with them on a level usually reserved for friends for many years.  We laughed, teased each other & felt so comfortable finding our groove together.  I knew that I wanted to spend more time with them & learn more about their business, Smergos. Time has run away from us as we all have busy lives with work, doctor’s visits & life plans (ahem – Nick’s wedding coming up!).  So…

  • Local Businesses,  Treatments

    Hospital Spoils

    I have been admitted into hospital over 100 times – easily.  The first year of my diagnosis saw me spending more time in hospital than I did at home.  I have had over 20 operations (I can’t remember the exact number & to be honest can’t even remember all the operations – I try to block these from my memory once they are over).  This means a LOT of time spent lying in a hospital bed.  It means sore muscles, hairy legs, uncomfortable beds, greasy hair, being run-down & generally just feeling rotten. It means long days of doing nothing, & not wanting to actually watch one more TV show…

  • Events

    Get Me To 21

    Even if you are not directly part of the Rare Disease Community, I am sure that you have heard of Jenna Lowe.  Perhaps you were even lucky enough to meet this young lady.  Maybe you have visited her website, & became an organ donor when you heard from someone waiting for her lungs how dire the situation is. Jenna was an inspiring young lady who never allowed her diagnosis to hold her back.  She lived life to the fullest, encouraged & inspired others, & was constantly striving to create awareness around organ donation.  You see, Jenna had Pulmonary Hypertension. Jenna was young, bright, beautiful and articulate. Lead SA’s Youth Hero…

  • Treatments

    Rare Disease Day 2019

    Being a #RareWarrior means that today is one of the most important days of the year.  As you can tell by the title, it is International Rare Disease Awareness Day.  Being part of Rare Diseases SA means that I get to see behind-the-scenes & I am constantly in awe of just how much this organisation does.  When you mention that you have a particular rare disease, or are trying to raise awareness for one, people often look at you with total confusion & have no idea what you are talking about.  We need to work together to raise awareness & show that we are #AwareAboutRare & #Care4Rare. According to the…

error

Enjoy this blog? Please spread the word :)