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!