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

Happy ITP Day!!!!!

       

Meredith Prescott and her best friends

Meredith Prescott has many reasons to celebrate today. She has taken her fight with ITP to a whole new level....

            Today is September 27^th,. For almost anybody, this day is another day or a date you look past once its over.  But to me this day is monumental and will continue to be remembered.  Today is ITP day, a day dedicated to spread awareness and honor the lives that have been taken due to a rare and cruel blood disorder.   Today marks the 10-month anniversary of when I was diagnosed.  Today marks one of the most crucial blood tests at the hospital that I will draw as I have been fortunate to be weaning off the medicine, but today’s test will determine which direction I will go.  The irony from day one of my journey still stands strong.

            As I look back over these past 10 months, I cannot believe how much has changed but how fortunate I am regardless of all the challenges I have had to overcome.

            While many of us at 22 would say their biggest accomplishments are graduating from college, getting their first job, or starting a graduate program, mine is far from that. While those are all great accomplishments and should never be underestimated for anyone, those mean an ounce to me compared to what was accomplished on August 11^th. 

            When I think about perspective and life, helping people and giving back to others are the most important values of mine. After writing my first blog post on a whim, which took off with over 6,000 views in just over a week, I knew I was capable of making a difference. I wrote it as a preface for the walk/fundraiser and wanted to utilize my energy into something positive.

           

The organizers of the walk/festival

This summer I organized with my two best friends and the organization a walk/festival for Platelet Disorder Support Association. PDSA is the sole organization that supports ITP by promoting advocacy, education, and research.  This organization has united many from all over the country who have ITP since it is not common and has amazing support groups for those who have it. Because ITP gets no awareness from the general public let alone no national funding, it was so important that others learn and know what ITP is so that someday there can be more treatment options and a cure.   This was the FIRST big event ever in the tri-state area and raised more money then any walk in the country totaling way above $40,000.

            I am grateful to have grown up in Livingston, NJ.  The community itself along with its residents were beyond incredible by supporting this walk in multiple capacities. 

The town along with many others showed up with over 200 people to walk and participated in the festival, which included the slides, eating, and the silent auction.  The town let us use the highschool’s oval for a few hours and provided security and police.  Local businesses were beyond generous by supplying food, prizes for the silent auction, and a slide.

            I gave my first real speech in my life, which I never thought I was capable of doing, since I wouldn’t even take communication class in college because I was so afraid of public speaking.  Strangers I had never met showed up to the walk and donated and were so excited to hear about something different and unique. It offered perspective to others and people with ITP were so thankful that this day happened and although many couldn’t make it because not many are from my area, they felt encouraged to start a fundraiser in there area.  Some patients came locally and were shocked and so excited to actually see something being done for ITP. Many from all over the country contacted me thanking me and were so happy that to see more being done.  My doctor, Dr. Bussel, a top doctor in the world, spoke along with the organization director.  He had never been to any walk or fundraiser for ITP before, as his office was beyond stunned that this actually happened.  The mayor of my town came and Livingston was a united community on August 11th.

Dr. Bussell, the Mayor of Livingston, Nancy (PDSA) and Alan Karpas

            I’ll leave you with one last story that shows the impact of the walk, being an advocate and speaking up about ITP.  One of my closest friends was wearing the purple sport bracelet this week that I handed out at the walk to give to all the participants.  She wears it everyday and often explains what it is when people ask. She was working for an oral surgeon at the office and decided to check the fax machine.  She never does that, but the secretary was ironically out so she figured she would. She picked up a blood result sheet and decided to look at the platelets.  They said 3. She immediately knew that that wasn’t the normal range because of me and ITP and this whole experience,.  She called the doctor who was at the hospital, and he immediately called the patient and sent him to the emergency room.  The patient originally came in for blood blisters in his mouth but had some bruising, thinking it was a dental related issue not realizing the severity of what was occurring.  Hours later my best friend was told she saved his life and the doctor thanked her.  Every minute matters, every choice matters matters, and every decision matters. I am grateful that my friends are so supportive, intelligent and realize how essential it is that people understand this so lives are not taken due to lack of knowledge by both the public and medical community. Sport purple forever.

Hello Everyone! My name is Erica and I have ITP. I've had ITP for 26 years. 

My parents took me to the hospital because my nose was bleeding and I was bruised from head to toe. The doctors had told my parents that I had a rare blood disorder. At the time the doctors didn't know how to treat it. As life went on, I would experience flare ups, some minor, others major. I was never allowed to play sports or do any kind of physical activity. Playing with my brothers and sisters was limited because they were very active. Sometimes all I could do was watch from a window.

As I got older into my teen years I had an episode where my platelet count dropped to three...yeah not three thousand but three. Doctors immediately wanted to remove my spleen (apparently that was the “cure”). My dad refused as he thought there would be a better way. After meeting with numerous doctors he finally found someone who would listen. Her name was Dr. Goldberg, and she started me on prednisone and IVIG. I was in the hospital for two weeks. My platelet count would go up and down but eventually stabilized.

As a child with ITP, I went through a lot of teasing because I had the "moon face". I learned how to laugh it off and move on but more importantly, this is where I formed my relationship with God. For the next few years, I would experience a couple of flare ups but nothing major. At that time I had an excellent Hematologist who kept up with my platelet count.

I later on became a preschool teacher (one of my dreams), but I kept getting sick because of the germs and viruses that was going around. One day, I was outside with my students and my nose began bleeding. My first thought was that I had another drop in my platelet count, so I was pretty scared. That day, I was walking home because I lived around the corner from my job. My husband happened to be on his way home and saw me walking. He described my walk like as if I was about to pass out. But I told him I was okay.

Later in the night as I was getting ready for bed, I looked at my legs and saw they were covered in bruises. I immediately called my husband in the room and said we have to go to the hospital. We went to the hospital and doctors ran some tests. I overheard some of the nurses talking and I heard, "do you want me to tell her or do you want to tell her." I started crying right away because I knew my platelet count was lower then I thought. One nurse came in and held my hand and said, “I don't know how you survived the day.” Confused, I didn't know what to say. She continued to tell me what my platelet count was.

One.

So I had to quit my job (a job I loved) as a teacher and my husband gave me the option of not working altogether. He felt that it was more important for me to be as healthy as possible. He knew that it would be difficult for us financially, but he told me that he would figure it all out. Thankfully, there wasn't that much to figure out.

Now I am 30 and haven't had an episode since. I am always checking and I get my blood checked periodically. Though my hematologist told me I would have this for the rest of my life and it is something I am going to have to keep my eye on, I try to stay positive. I started working out, eating healthy and taking my vitamins. I didn't want to spend a lot of time on the couch so I started my own photography business where I have control over my schedule. I also spend a lot of time with my son who is my little hero (ever since I had him my count has been wonderful).

I must say I owe everything to God because He gives me strength. He gave me my husband and my son, who are my support. He has shown me that I may have this disease but I am not defined by it. ITP does not define me, and I jump at any opportunity to tell others the same.

Stay positive...keep smiling...and I am sending hugs to you all. God Bless.

What are You Doing for ITP Awareness Month?

September is ITP Awareness Month!!!

We want to let the whole world know about this terrible blood disorder!!


What is going on in your part of the world? 

In the UK, the ITP Support Association is posting "ITP Facts" every day. These are great bits of information you can share with your family and friends via Facebook. Most non-ITPers don't understand our trials and tribulations we face everyday. The "ITP Facts" can help clear up some of the mystery.

They also have daily POP (Pictures of Purple) posts that were sent in from ITPers from around the world. Thanks to Anthony Heard, we can all share this great information every day this month!

In the US, The Platelet Disorder Support Association (PDSA) is sponsoring all kinds of activities including "Pump It Up For Platelets" walks/runs and the "Sport Purple For Platelets Day" (Sept. 27). 

The PDSA has suggestions on ways you help with fundraising as well with their 50 Ways to Fundraise fact sheet.

There are many folks who have activities planned for this month. Please let us know what you are doing by commenting below. Who knows, you may have some surprise visitors attending your event!!!

Showing Off Our Purple Spirit

September was ITP Awareness Month

What a blast we had spreading the word about ITP and showing off our Purple Spirit on the 28th (US) and 30th (UK). But it was not limited to just the US and UK. Around the world, ITPers have shown their support in spreading the word. For example. support groups through PDSA are being set up in Canada. In Germany, there was a ITP Awareness Day and as you will see in Muhammad Tahir's picture, World Platelet Day reached all the corners of the world. Wow, what great bunch of people spreading the word!

Lynda VanderBilt is the captain of our cheer leading squad so she will take our show from here.

Give me a P.......

Give me a L.......

Give me an A.....

Give me a T........

Give me an E......

Give me a L........

Give me another E

Give me a T.........

Give me a P...O....W...E...R

What have you got?

PLATELET POWER!!!! 

 Amy Sellers Hudson and her football pro, Branden

 Arnold Schwartz at the Cardio

 Caroline Burkat Hall in her purple pajama top

 Dale Paynter got his whole office in on the fun

 Elaine Twohig Odriscoll is pretty in purple

 Emily McTyre wearing her favorite purple shirt and holding her favorite little boy, grandson Josh

 Genevieve Kilianek created this beautiful bow

 Grandma, Avery and Brandy DeWitt

 Hayley Shimanek's Labs Cocoa and Diesel sport purple for platelets

 Jackie Fiamengo-Sunara and Darla got dressed up too

 Jay Jacinto sporting his 'got platelets' hat

 Jenn Briggs and Sugar

 Samuel Lollman didn't need to buy a purple shirt!

 Katybeth Jimenez looks good in purple

 Linda McGuirl, purple from head to toe

 Linda Eschen even color co-ordinated the wall to match her purple spirit

 Lisa Cassella and granddaughter Sophia sporting their purple

The purple highlights look great with Margie Doman's red hair

 Jaxen Ford was supported by his whole school

 Ros Bryan, our sassy Aussie

 Muhammad Tahir is a fighter, ITP cannot stop him!

Larry Lee sporting his GOT PLATELETS bracelet from PDSA

Kim Barthels Purple Platelet Power "I have ITP, but it doesn't have me! 21 years!

There were many more of us sporting purple for platelets, sorry I could not include everyone.

Just wait til next year!!!

Rachel Pagano Chahir is a very familiar name to many folks. She has been a voice on many of the ITP Support Groups and has helped us to see this disease through her eyes.

Rachel is also very busy spreading the word about ITP and made "GOT PLATELET HATS" to share with us. Through this endeavor, she also set us a contribution page through PDSA to raise funds during ITP Awareness Month. If you would like to contribute to this worthy cause, check out her donor page at http://pdsa.donorpages.com/HelpRachelChahirFightITP2012/

Another project under way is the 

St. Gennaro Festival BLOOD DRIVE & ITP AWARENESS

Rachel and Linda Guy McGuirl are going to have a table set up at the festival with information on ITP. 
It will be on Sunday, September 23 at St. Patrick's Basilica Youth Center, 268 Mulberry Street (between Houston and Prince) New York City.

The American Red Cross will be there for folks to donate blood. Blood is in short supply. Call 1-800-Red-Cross to make an appointment or to get information sent to you. All donors will receive free cannoli! 

Join in with the fun, food and festivities at the San Gennaro Feast, learn a little something and donate some blood while you're there too.
https://www.facebook.com/events/348196801939778/

A MESSAGE FROM RACHEL:

My name is Rachel Pagano-Chahir, I was born in Long Island to an Italian-American family and then by two years old we came back to Brooklyn where our relatives lived and we could have a real sense of neighborhood. From my early childhood I always knew I wanted to help, so I decided I was either going to become a Nun or go into medicine. I chose the later and became an RN in 1981. This was a dream come true cause I had a job that I really loved and gave me great pleasure. I found great comfort in helping others get well, understanding their conditions and being able to to heal. As I kept a very busy pace working 3 days a week 12 hour shifts, caring for a disabled husband, a mother who had cirrhosis of the liver and my father who had early dementia and raising my son, while volunteering for McDonald house foster home program & Covenant house, it wasn't unusual that at times I felt very tired and fatigued.

What surprised me the most was when in December of 2002 I was hanging my decorations for the Christmas season, when I slipped off a ladder and slid down, I didn't think much of it. Getting dressed the next morning my entire leg was black not on one spot you could see my skin, thinking I must have had bad fall then, I continued on my day. As I brushed my teeth, blood started to squirt out from the inside corner where your jaw meets, again I said what? and in a hurry I dealt it off to a period problem..Later that day at work I felt completely cold especially my hands and feet. It went on for days like this and the bruise on my leg wasn't clearing. I went my GP who was a co-worker and friend and she said, of course you are runned down, look at the schedule you keep, the fall you took, you really need to eat better and make sure you take your vitamins. Well we left it at that.

After months of me becoming a walking "poster woman for domestic abuse" because of all the bruising I finally said I think its time for a second opinion and looked to get in with a hematologist. Much to my surprise his first reaction was I think you have "ITP" but I would like to run more test and do a Bone Marrow to rule out the "L' conditions. My world and the life that I had lived changed from that day forward...I didn't get diagnosed till 2006 andstarted treatments IVIG, steroids. I had an TIA and partial loss of vision in my left eye, I was depressed, weak and fatigued. I spent most of my days laying down or sitting and could only do things for a short time. I had brain fog. 

How can this happen to me I said? I'm the one that takes care of everyone, now I'm on the other side and this wasn't my life anymore, it was an ITP life. Trying to gain some control I opted to have a spleenectomy 8/15/12 at age 52. Well after 3 months, it didn't work I'm back to being refractory. I will not give up, but if ITP is what I have to live with I am going to direct my anger, my sadness, my caring nature to spreading awareness to those that might have and don't know and to the world and doctors that need to learn and push for more research.

Thus for September ITP awareness month, my son who does graphic design and studying Architecture helped me put together ITP Awareness caps "GOT PLATELETS?" So we can spread the word and bring the nation of rare blood disorders. They are my way of giving back to PDSA & fellow ITP'ers and support groups for their unending hope, knowledge and support.

September is ITP Awareness Month

September is ITP Awareness Month. Many of the members of the ITP and Me support group are truly in the spirit of showing off our purple for this month.

What can you do to help spread awareness? 

These suggestions are from PDSA website. (Platelet Disorder Support Association.) http://www.pdsa.org

• Write a letter to your congress person. A template is provided here.

• Contact your local media to be interviewed about ITP. A press release is provided here.

• Distribute PDSA Brochures to doctors' offices, pharmacies, hospitals, libraries.

• Attend a local support group meeting – bring a family member or friend. 
  See a list of support groups and meeting dates by clicking here.

• Participate in our 3rd National Walk/Run: Pump it up for Platelets ~ for a world free of ITP.
  See a list of participating sites by clicking here.

• Organize a walk or other fundraising event. For ideas, check out our “50 Ways to Fundraise”.

• Contact local civic clubs and offer to speak about your personal experience with ITP.

• Coordinate a display at a health fair, store, or hospital.

• Ask your city government to publicly acknowledge ITP Awareness MonthSM.

• Share information about ITP Awareness MonthSM with your contacts on Facebook, Twitter and other online sites.

• Download the ITP Awareness Ribbon and share on your pages or make your profile picture.

• Join PDSA or give a gift membership.  More information can be found by clicking here.

• Make a donation.

PDSA has done so much for ITP awareness, research and recognition. They worked very hard to get ITP Awareness Month recognized.

Their website has invaluable information for ITPers, caregivers and anyone who wants to know what ITP is. 

Thank you PDSA for all you have done and continue to do for us!!