Let's Get the Word Out! New Book about ITP

 My Purple Patch by Anthony Heard

ITP turned my world upside down. It probably did the same thing to you. It's mind-boggling to be diagnosed with a blood disorder you have never heard of before. That's why we are trying to spread the word about ITP so no more newly diagnosed ITPers have to wander around in the dark wondering what is happening to them.

Anthony Heard works tirelessly to keep us up to date with the latest information concerning ITP. Through his work with the ITP Support Association, his blog, Facebook, Twitter, and other social media outlets, Anthony offers support to ITPers worldwide.

His latest venture is a book relating his experiences with ITP. 

My Purple Patch answers many of the questions asked by ITPers and their caregivers such as:

• What is ITP?
• What are the symptoms?
• How is it diagnosed and treatments available?
• What do we actually know about ITP?
• Alternative and natural remedies
• Traveling with ITP
• and much more

My Purple Patch is available in paperback and e-book editions. Pick up a copy for yourself, your friends and family, and/or anyone else you know who has this blood disorder or wants to learn more about ITP.

Amazon US 

Amazon UK 

Amazon CA 

What a Glorious Day!

It's hot and humid - absolutely miserable outside. 

My dog and I got soaked in an unexpected rain shower. I've been awake since o'dark-thirty and have been working ever since. (No, I'm not on Prednisone. I don't know why I have been so energetic)


Why Am I So Happy? Because of the wonderful compliments I've received for an article I wrote. The kind words have put me on cloud nine. It is a glorious day!

In my last blog post, I wrote about the healing power of the written word. It is true. Writing can release stress, tension, anxiety, anger, frustration, etc and helps our bodies to relax and mend.

 I write for a living, and it's not always fun. Most of the time, it's just work. But there are a few instances when a story or article is special. The kind that gives me a warm feeling inside, an inner peace. Like the article that was just published.

It's my ITP story. It took a while to finish because I poured my soul into it.When it was completed and submitted, there was a... (hard to describe) ... a sense of well-being. It wasn't because of the words I put on paper, so to speak, but because it was an emotional release. I was able to share an experience that changed my life. As a bonus, it may help someone else understand ITP.

That's why I encourage all my fellow ITPers to do the same thing. Write your story and post it here on our blog. Get the pent up worry and stress off your chest, and I guarantee you'll feel better. Several people have already committed to writing a guest post and I encourage more of you to think about it. Sit and let the words flow. Don't worry about grammar and punctuation, that can be taken care of later. Just let your feelings out. You'll be pleasantly surprised at the results. When you're done, send it to greta799(at)yahoo(dot)com.

Oh by the way, if you want to read my story, here's the link
Have a glorious day....

The Power of the Written Word

Hello.... anyone out there? 
Yes, I know, it's been ages since anything has been posted on this blog. But that's going to change - with your help....

Yesterday, I was inspired by reading Anthony Heard's ITP blog. Most of us know Anthony from all the wonderful work he has done with the ITP Support Association in promoting ITP awareness across the UK.

His blog, My Purple Patch, recounts his roller coaster ride with ITP. I've known Anthony for several years (virtually) but was not aware of his experiences fighting this dreadful disease. I highly recommend clicking the link above and spending some time reading his story. As the Brits say, it's absolutely brilliant!! In American terms, it's fantastic!!!

My Epiphany 
As most of you know, I'm a freelance writer. I've been working on an article for a caregiver's magazine and ran across an interesting study that showed how writing about traumatic events can help with healing.

Here's an excerpt from my article:

The study used patients with rheumatoid arthritis and asthma and had the experimental group write about the most stressful event(s) of their lives. The participants wrote for 20 minutes over three consecutive days. They were instructed not to worry about spelling or punctuation, just get their thoughts and feelings down on paper. The control group wrote about general topics, such as things I need to do today.

The participants from both groups received medical check-ups after two week, two month, and four month intervals.  After four months, the participants in the asthma experimental group showed improvements in lung function, and the ones in the RA experimental group showed improvements in overall disease activity. The control groups showed no changes at all. This study showed that writing about emotionally traumatic events (death of a loved one, family/relationship problems, major accident, etc) reduced the symptoms of the patients’ chronic illness. Fascinating, isn’t it?

Then today, a fellow author posted a link on Facebook to an article from bbc.com  asking the question: Can writing about pain help boost your immune system? A psychology professor conducted an informal study where he asked students to write about the biggest trauma of their lives. At the same time, a control group wrote about neutral topics. He followed both groups for six months, and found that during that time the students who wrote about the traumatic events made fewer trips to the doctor than the control group. Coincidence?

I started thinking (dangerous, I know)...When this blog was active and ITPers wrote guest posts, a number of them commented about how they felt so much better after writing about their ITP experiences. Did we proved the studies have merit??? 

Here's where the epiphany comes in...

Between Anthony's inspiration, the studies, and the comments from previous guests, I realized this platform can be beneficial to my fellow ITPers. Why not get ITP...In Our Words active again? 

Here's Where I Need Your Help

I need you guys to write about your experiences with ITP. If you are unfamiliar with this blog, we started it a few years ago as a place to vent. Having ITP can be frustrating, irritating, and confusing. Most of us are learning as we go along this path. The trial and error treatments work sometimes, other times not. What works for one person may not work for someone else. We are all unique and have a story to tell.

You may think I'm not a writer; I can't do this! or I don't have anything interesting to say or Who cares what I think! 

Answer:
You don't have to a writer - just sit in front of your computer and let your thoughts, feelings, worries, frustrations, etc. flow through your fingers. You'll be surprised with the results. Don't worry about grammar, punctuation, or misspelled words. You can make edits later. Just go with the flow.

Your journey dealing with ITP can help others who are on the same path, suffering the same side effects from meds, have the same questions, or cringe from similar fears. We are a family and need to support each other. Whatever you have to say will be appreciated. The power of the written word will make a difference in your life and in the lives of those who read your story.

Send your post to greta799@yahoo.com. Put 'ITP Post' in the subject line. We'll publish one per week.

Thanks everybody, and believe in the Power of the Written Word

Something New For ITP Awareness

Last month, I was sitting here in my cluttered office debating on whether I should start cleaning this place up or do something else.

Cleaning is my least favorite activity so the "something else" option was open for any clever ideas that might pop into my head.

Earlier that day, one of our fellow ITPers, Tom Schilling, had asked about where to find decals his auto-racing buddies could put on their cars and equipment to promote ITP Awareness Month. PDSA had some decals but they were too small and custom-made decals were too expensive.

Ah ha, maybe I could make something with my handy-dandy Paint.net program. That lead me to making several designs to put on various items in my Zazzle store and now I'd like to present my efforts to you.

I'm a firm believer that we need to spread the word about ITP Awareness, not only in September but all year round. So I made some coffee cups, tote bags, key chains and bumper stickers that would make great conversation starters in our quest to inform our friends and colleagues about our blood disorder.

 Take a look at the items I created and give me your thoughts, constructive criticism and any other ideas you may have on how I can accomplish my goal of "Spreading the Word."

I'm going to make more designs and try to add some T-shirts and posters to my Zazzle store as time goes on. 

Take a look, and see if there is anything you'd like to purchase. A portion of the royalties will go to PDSA.
Here are the links:
US 
UK                                    
Canada 
Germany 
Spain 

France 

Sweden 

Netherlands

Norway

Switzerland

After you get to my home page, click on this icon to go to the ITP store: 

Thank you my friends and may you all have high platelets.

Happy ITP Awareness Month

ITP and Bruises....What Can We do About It?

What do you do when you are about to celebrate one of the happiest days of your life but the bruises associated with ITP cause you to be self-conscious?

Meghan Brewster, like many of us, didn't want her wedding pictures to be spoiled by the tale-tale signs of having ITP and found a way to ease her mind. She wanted to share this information with her fellow ITPers. 

Admit it, we are all embarrassed by the unsightly bruises associated with ITP. When long sleeves and pants are not a solution, this may help.

I have had ITP for 6 years. 

When my partner and I got engaged in January 2013, I started to worry about bruises showing up on the wedding day and in the photos. 

It was stupid.  Nobody else ever notices them as much as me.  Everyone tells me not to worry.  I am embarrassed and point them out to people before they have a chance to say anything, before they notice.  I like to explain straight up that I already know they are there.  

I was diagnosed with ITP in early 2008.  It was all very scary.  I remember trying to keep it all a secret, until I knew what to tell everyone.  Apart from one of my sisters, nobody knew about my trip to the emergency department for the first twelve-ish hours.  Looking back I know I was silly to do that, but at the time it felt like such an unnecessary hassle to keep calling my family and freaking them all out.  I didn’t want anyone to worry for no reason. 

Twenty-four hours later I had a pretty solid diagnosis that was reconfirmed during the week, with every passing test.

A few years ago, I started writing a blog called ITP and Me, which has been a wonderful source of information sharing over the years.  It has allowed me to meet and chat with lots of ITP patients from around the world.  I don’t know anybody else with ITP in my social circles so it has also given me a way to share everything I have learnt with the people who might benefit the most.   

With the wedding approaching, I talked to a friend of mine who is a professional make-up artist and she told me all about covering bruises with a colour corrective concealer.  I was amazed at how little I knew and how easy it would be. 

The first stage of bruise is usually red or pink.  These are very young bruises and probably hurt a lot still.  In this first stage of bruising, the best colour concealer is one with a green base.

A deep or large bruise will turn blue or purple.  These bruises are the most unsightly and the ones you will want to cover up the most.  During this stage in the bruises' life, it is best to go with a yellow based concealer, or any concealer with a yellow tint in it.

When your bruise is at the end of its life and starting to fade, it will turn yellow or green-ish.  These bruises are the easiest to cover up as they are normally quite thin under the skin.  These bruises are best covered with a lavender based concealer before any make up is applied. 

I wrote an article about matching bruise colours to the right colour corrective concealers and it is now one of the most popular articles on ITP and Me.  Writing this article helped me to realise that people with ITP are looking for practical advice.  

Medical websites and journal articles can only help so much.  ITP patients are looking for information on how to work with ITP on a daily basis and want tips to make their disorder easier to manage. 

It turns out there was only one bruise on my body for the day of the wedding; a circular bruise on the topside of my foot.  The photographers (who were amazing) simply removed it with Photoshop.

Thanks Meg.  

We may have ITP, but ITP does not have us.  

Meredith Prescott has written 

a letter I think we can all 

relate to. We have all felt 

her anger, frustration and 

determination in dealing with

our mutual foe....ITP

Take a look at what she has 

to say


An Open Letter to ITP:

Dear ITP,

         When diagnosed with you 17 months ago at just 21 years old, I had no idea what was ahead of me.  I had no idea what you were capable of.  Truth be told, I never knew you even existed.  

         When I found out you were a rare blood disorder that destroyed my platelets, the cells that clot my blood, I was angry.  I wanted to destroy you.  I didn’t get how you could appear out of nowhere and why you targeted me.  You made me look fine on the outside but not on the inside. How could you be so fake?

         I began to learn with much research and doctor’s visits that there is no rhyme or reason why I got you.  You are not genetic and you can strike at any age.  You can last forever or you can go away any day.  I guess you just really are that unpredictable.

            It was like that time you had me fooled.  It was the first few weeks of you and I, and I was doing really well on a horrid drug called prednisone.  After all the cruel side effects, I was told it was worth it because it was raising my counts and that It would be over when I finished it. But then you hit full force and my platelets crashed.  You caused hours of infusions, fevers, blood draws and hospital stays. You have always been so painful and deceiving.

                  Sometimes you’re pretty scary.  You make me fear each and every time I see a bruise that I may be internally bleeding.  You’ve make me weigh the options of surgery and chemo.  You make me realize that there’s a chance I will undergo a splenectomy in the near future. You make me scared when my counts are low that I will have a brain hemorrhage and not wake up in the morning.

         You put tears in my eyes when I hear about those who have lost their battle. You have put a burden on my family and friends that should never have been placed.  You’ve destroyed children’s childhoods and made them grow up way faster then they ever should have. You’ve taken lives from beautiful people. You should NEVER exist.

         So ITP- you’ve made everything in my life 100 times harder then it ever should be.  You made me leave University of Maryland, my final semester in college.  You made me miss out what could’ve been some of the best days of my life. You make doctors draw countless viles of blood with painful needles each and every week.  You’ve made me wait endless hours at doctor’s offices shaking with the anticipation to hear my platelet count. You have made me try toxic treatments I wish I never had to. You have made me so exhausted even when I should be energetic. You make me live in the unknown.      

         But ITP, I personally must thank you.  You make me live my life with absolutely no regrets. If I didn’t live my life to the fullest from the beginning, I sure as hell do now.  You make me motivated to achieve things I never thought I was capable of. You have taught me things in my life that have made me wise beyond my years, that I only wish I could instill in others.  You let me experience my first heartbreak, which was you.  You have made me want to help anyone and everyone I can that has you.  You have opened the door to friendships I have with those who have you, which I cherish because they are some of the most unbelievable people I have ever known.

I am planning a second fundraiser this June with other fighters to rid you of this world, because no one should ever have to endure you. You are that destructive.

I know I can’t say goodbye to you yet, but you have made me so strong that I know I will beat you. You’ll just have to wait and see.

        

Love,

Your fighter

Meredith has organized her second annual 5K run/walk in

association with PDSA to raise money for ITP research. 

Sunday, June 8, 2014

The Livingston Oval ~ 30 Robert H Harp Drive ~ Livingston, NJ

12:00pm - 3:00pm

I know many of you are not in the Livingston NJ area but 

you can still show your support and follow her progress by 

clicking this link:

http://pdsa.donorpages.com/PumpItUpNJ2014/MeredithPrescott/

Meredith's goal is to raise $20,000 and she's already got 

pledges for over $5000!!! 

You can also participate in her Facebook event:

https://www.facebook.com/events/261358180703865/

Let's show Meredith our appreciation by supporting her 5K Run/Walk. Go for it, girl!!!!!

Hello, my fellow ITPers.

Below is an email I received this morning. It is directed to the parents of children diagnosed with ITP.  I'll leave it up to you to research MedQuery and decide if you want to participate.

Disclaimer:

I do not know the company or the person who sent the email. I am not endorsing this company and am not receiving any compensation for posting this on our blog. 

Hi Greta,

My name is Della and I work for a company called MedQuery based in Chicago, IL. MedQuery is a medical market research company and we are hired by pharmaceutical, medical device and biotech companies to conduct paid market research interviews and surveys for them. The reason I am reaching out to you is because we have a market research opportunity and I hoping your organization could help us reach the parents of children diagnosed with ITP. This is in no means a sales approach or solicitation. We are simply interested in hearing from the parents to understand the day to day impact this diagnosis has made on their child’s life/on their life and any areas of unmet needs whether it is referencing pharmaceuticals, educational information, support groups or even physician familiarity etc.

The interview would be a 60 minute telephone interview on the topic of Latest Developments for Chronic Idiopathic Thrombocytopenic Purpura. In appreciation for participating, we are paying respondents $150 and they would need to complete a short homework assignment 1 week prior to the interview. The interviews are being conducted from January 10th - January 24th so we are hoping you can send this out as soon as possible.

I was hoping you would be able to post this on your blog and if anyone is interested they can directly contact us at MedQuery. Please call Jackie, recruiting manager, at 312-241-1649 to see if you qualify to participate. WE REALLY NEED YOUR HELP and we look forward to hearing from the blog members.

Thanks in advance!