Awareness month

Hey you...
Yes YOU!!!..
Are YOU aware??
Let's spread the awareness, spread the word!!
Wear purple proud, share stories, updates, pictures..
Change your profile picture for the month!!
We can make the difference ♥

This is my facebook status, I have shared it in some groups also..Simple reminder. Here I am sure we are ALL aware of ITP but getting the word out and reaching out to others is one more step closer to more research!!

I hope all is well

On Facebook there is a page that has been having daily facts on ITP as apart of awareness month. So I've been sharing that way!

There is a guy on there who made a video (song parody) called You've lost that clotting feeling.

That guy shouldn't be singing

Totally sported my itp shirt today and my mom got one too! Go mom!

A lot of diseases have awareness weeks or months but it got me thinking.. why do we want people to be aware of ITP? That's a serious question.

For me personally, I would like people to understand that I am living a pretty normal life, however I want people to understand that at sometimes, I may need more rest than most and can not be put in dangerous situations. ( this stems from incidents that happened to me at work because my boss does not understand this disorder). If the did understand, she would be more understanding and not be putting me near students who are violent.

I'd like to see more people aware for multiple reasons.

1. For better understanding of what people with ITP go through.
2. Awareness brings education and better understanding of the disease.
3. Maybe just maybe the awareness will trickle back on doctors and I will never have to enter an emergency room with zero platelets and spend 2 days waiting for them to figure out how to treat me. (because they do not know about it)
4. More awareness will help future people who are just being diagnosed. Less terrified people out there!
5. Awareness may just bring more attention to the disease. More attention more research hopefully leading to better treatments!

All the above! Especially Winnifred's number 5. My son is refactory to the IVIG winrho and steroids so now they don't know what to do. Also I had never heard of ITP before my son was diagnosed. I was sent home terrified, positive at any moment my 1 year old who was sitting at 1k was going to bleed for no reason. I searched the internet for days. Finally I found this site..THANK THE LORD, and it helped so much. If people are aware, they will have a better understanding. If a co-worker, friend, family member, neighbors, whoever is diagnosed, they can say Hey I heard of that..I know it is hard but check out this site or whatever help it might be.

Dr walks in says his platelets are less than 1 we believe it is ITP
The biggest fear is he will bleed in the head..WHAT????
Just an example: If they walked in and said he has diabetes, The biggest fear is a seizure or coma, As a Mom I still would of freaked, but I heard of diabetes, I know people live with it everyday, I know it can usually be managed. It might not of been so scary if I knew others were living with this.

Okay....I changed my avatar for the month.
But wearing the purple color can be confusing, as it seems to be used for many many causes:
Interestingly enough....I looked at five different 'color ribbon' sites and none show ITP in the purple list.
But really, purple seems to be used for everything from; .. 'Alzheimer' .. to .. 'Lupus' .. to .. 'eating disorders' .. to .. 'Children Left Unattended in Cars' .. to .. 'Pagan Pride' (my personal favorite), and a host of others!. There is a separate list for lavender.
Most of the people that I have explained ITP to look blankly at me as if I had two heads and just go, "Oh, I'm sorry".
Then they go away thinking I have HIV or cancer..and they might 'catch it' ...... so I quit telling people.
.

We had shirts for our family made. Bryan's says ITP fighter, mine says mother of an ITP fighter, Daddys..and my other childrens says bye bye ITP bye bye forever. We had them made last year but it was honestly cheaper than to design our own, than it isn't just a purple ribbon.

One shirt says Bye bye ITP bye bye forever..bye bye ITP we need Bryan better..
I sang that to him to put him to sleep at night only I sing Bry Bry..No worries, I won't sing it on Youtube

Is there a Kate Upton awareness month?

Jeffrey

I am going to order me a shirt to run in!

Jeffrey,

Maybe you can write a letter to her and maybe she would be willing to sport a shirt!

Yea Jeffrey write her a letter tell her you have this rare disease that could kill if you if it goes untreated. You could even throw in the fact that treatments cost thousands of dollars. Celebraties love hard luck/ sick stories!

You know that is a good thought!