Work in progress… a little bit about each of us so you know the faces and the stories behind the words and pictures shared here!

LAURA (Yorkshire, UK)

Battling an array of mysterious symptoms since 2001, I was diagnosed with Inappropriate Sinus Tachycardia in 2010 and will be getting tests in April to determine whether I have POTS (watch out for the update!). I believe that no matter what, life is here to be enjoyed to the best extent that you can. I hope that this blog will raise awareness but above all, spread hope to others with incurable illnesses, to transmit the message that what seems impossible might just become possible- if we DARE to hope, DARE to dream and DARE to fight against the doom and gloom of whatever dis-ease we may be diagnosed with.

LYLA (Dallas, USA)

I was diagnosed with Inappropriate Tachycardia in April of 2009, but have suffered from Mysterious symptoms for years prior to 2009. I then got diagnosed with POTS in May of 2009 and had to quit working as a RN which was my passion. Since then I have been trying to raise awareness everywhere possible because I believe the lack of awareness is one of the main reasons that there is not effective treatment for those who sufffer with POTS. POTS has taken away so much in my life, but I refuse for it to take away my drive, hope, laughter and perseverance to make my future better than my present life!!!!

Michelle (Melbourne, Aus)

I’m the grandma of the group, at age 36.  I’m married and a mum of two teenagers, two intellectually-challenged great danes and an incontinent elderly cat.  In 2007 I was diagnosed with dysautonomia after a long and frustrating medical journey.  My doctor’s are unable to type me, so I remain with the nebulous, ‘severe dysautonomia’, as my diagnosis.  In 2008 my symptoms became too severe to continue working and I was forced to quit my job as a Neuropsychologist, and continue to be unable to work to this day.  Now I spend my days juggling my health, my mum duties, being a wife and ignoring my ever increasing collection of dust bunnies.  I tend to approach my illness experience with humour, exploring the more absurd sides of living with an illness that is far from normal.  Dysautonomia is a shadow being in many respects.  Raising awareness is vital in bringing this disorder out of the darkness, to ensure accurate diagnosis, treatment, and an understanding that this is a legitimate and disabling chronic disorder.

Kyli (New Jersey, USA)

I got the official diagnosis of POTS in 2005 after 4 long months of not knowing why suddenly, I could no longer stand without fainting. I was 19 at the time. I went from being a concert-going, fun-loving teenager to somebody who barely had the strength to hold a conversation. I remember thinking at that time, “I will never get through this” and yet, here I am! Over the years I’ve grown so much stronger because of this condition and now more than ever, I’m passionate about spreading awareness and helping other patients. Those four months with no diagnosis felt like an eternity, but I know that some people go decades undiagnosed. This breaks my heart and fuels me to try to make a difference.  I believe that together, we can do it!

Liz (Florida, USA)

After battling with doctors for 10+ years I got the official diagnosis in October 2009 rite before my 24th birthday (What a birthday gift that was for me!!)  I consider myself a child at heart. I love cartoons, going to Disney World when I am able to, and laughing about life. Like most I have struggled through allot of challenges but manage to get through it day to day with a smile on my face. I love to speak my mind and care for others. I have a creative flare I lost over the years but am starting  to find that part of myself again little by little. I believe as we all deal with so much it makes us stronger as individuals. I know living sick for so long with no support or care has made me a stronger person at the end. As I continue this journey I know there will be much to learn but I am so thankful for the friends I have made and the knowledge I have gained along the way.

Shannon (Ontario, Canada)

I developed POTS when I was just 13 years old and it came on fast and hard. Overnight i became too sick to stand, eat, or even sit up at times. I went through tons of tests and when all came back negative i was diagnosed with anxiety. Then one day, my family doctor noticed my heart rate was extremely high, and sent me to a specialist. I got the tilt test a year and a half after the onset of my POTS, and it was positive. It was great to finally have a diagnosis, but hard to accept that  I had a long and hard road ahead. It has been 6 years since I first got sick, and although there have been too many negatives to count, I have learned to focus on the positives of my illness, of which, surprisingly, there are many! I am a different person because of POTS, but I wouldn’t change who I have become for the world.



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