September is ITP Awareness Month. And the last Friday of the month is Sport Purple for Platelets Day. This year it’s on the 25th of September. Yay!
Here it is…
Feature image from KINGWALLS
I have always struggled with sleeping, more specifically, the waking up part. I had always thought it was a combination of being lazy, doing lots of exercise, and having an autoimmune disorder. I never dreamed that this whole time, for almost 30 years, I’ve been struggling to sleep, almost choking to death in the night from sleep apnoea. FU*K!
A recent trip to the dentist confirmed just that. I had been concerned that my teeth were moving around a little in my mouth. I was worried I would end up looking like future Lisa Simpson if she never got braces. I verbalised my concern to the dentist, asking if there was some sort of mouth plate I could wear while I slept. I told him my jaw and cheeks often hurt a lot when I woke up and I was worried I was clenching my jaw or something.
Three weeks later, one overnight sleep study and a long look inside my mouth and ears confirmed that I had been struggling with mild sleep apnoea for probably my whole life. Continue reading →
Joan Young’s life dramatically changed when she was diagnosed with Immune Thrombocytopenia. After an overwhelming response to a website she created, Joan eventually founded the Platelet Disorder Support Association or PDSA. The PDSA has been running since 1997, and this organization now reaches out to blood disorder patients in over 130 countries.
WISH BY SPIRIT is the story of her journey. From the very beginning, the reader knows that this is a story of healing. I began reading this book knowing that there was a secret waiting for me at the end of the book.
A long time has passed since Young came through her battle with ITP, and many things have changed since then. Treatments, attitudes, knowledge and understanding have all developed to help western and alternative practitioners treat patients with ITP together.
The Introduction to WISH BY SPIRIT is quite engrossing. It’s clear from the start that Joan is a great writer. I loved reading the conversation she had with her doctor where all the radical treatments were discussed and decided on before Joan had a moment to understand the disease she had. Continue reading →
Feature image from KIRSTEN RICKERT
Here are three books by women who have healed their autoimmune disease. This article is not intentionally about women only, I just couldn’t find any books written by men. If you know any please add them to the comments below.
Louise Hay is credited as a founder member of the self-help movement. Louise was able to put her philosophies into practice when she was diagnosed with cancer.
Hay considered the alternatives to surgery and drugs, and instead developed an intensive program of affirmations, visualization, nutritional cleansing, and psychotherapy. Within six months, she was completely healed of cancer.
This book is hard to handle if you’re not ready to hear that you might be responsible for your own disease. It’s an interesting read based on anecdotes and word of mouth, but there is also a truth that is hard to argue with. That if your immune system can kill your platelets then your immune system is capable of stopping killing your platelets. Continue reading →
HEARTACHES AND MIRACLES is a recount of Greta Burroughs’s journey with ITP. It begins with her initial diagnoses of ITP and takes the reader through each of her remissions, each of her treatments and each of her surgeries. This is not your typical ITP story.
Many of you are probably already familiar with Greta Burroughs. She is the founder of ITP…IN OUR WORDS, a blog for ITP patients. This book is her story. It’s honest and personal, it’s also punctuated with interviews and quotes from other ITP patients which make for a refreshing change of pace between the chapters.
There is a welcome comradery in HEARTACHES AND MIRACLES that I have not often experienced having a rare disease. I felt like I had actually found somewhere I belonged.
The book gets off to a slow start, beginning with a dedication, a foreward, an introduction and then acknowledgments. By this time, I was keen to get into the action and wondered if these might not have been better placed at the end of the book. Continue reading →
Feature image from TWITTER
It is no surprise that ITP has made it onto Twitter. There are a number of different people and organisations tweeting and sharing articles on ITP via #itpawareness #itp #itpproblems and #raredisease. Here are a few people to follow, below
UK Charity supporting sufferers of the autoimmune bleeding disorder Immune Thrombocytopenia.
Mum of Twins, adventurous, philanthropist, woman of many talents, ITP Patient (lack of Platelets) 12 years and still fighting to survive.