Author seeking information

Hello!

I'm an author of young adult novels and I'm currently working on a novel in which the female teenage protagonist has chronic ITP.

It's very important to me to get the details of the disease correct and present a depiction that is non-sensationalized and accurate. If any of you would be willing to share, I'd love to learn from your expertise and experiences. I've been so impressed with how supportive this forum community is!

I know your lives must be quite demanding so I completely understand if you don't have time, but if this is something that interests you, my email is TiffanyASchmidt@yahoo.com

www.TiffanySchmidt.com

Tiffany Schmidt is the author of a teen novel called Send Me a Sign about a girl with leukemia. The book received positive reviews for its portrayal of the illness and the girl's move from relying on superstition to more self reliance. If you are interested in talking to her about itp - take a look on Amazon and your public library.

Tiffany, how did you come to choose itp?

Erica (partner to a YA author)

Hi Erica,

Thank you for your kind words about Send Me a Sign! And how cool that you have a YA author connection too!

I came to choose ITP for my heroine because the novel is a modern retelling of the fairy tale The Princess & The Pea.

I've always been so fascinated by that story, because it seems to start MUCH too late and focus on the wrong part of the tale -- Why was the princess wandering alone in the storm? Why does she bruise so easily? And the social commentary of why her being "delicate" made her desirable.

While researching different diseases and disorders that can cause atypical bruising, I came across ITP and it seems to be the correct fit for the character and storyline, which focuses largely on her trying to find a balance in her life while dealing with a disease that's so unpredictable.

Thanks,
Tiffany

Thanks Tiffany. I like the idea of Princess and the Pea a lot. A great story that a teen member told on this board a few years ago - she was at a concert with her boyfriend and it was very crowded. Her boyfriend had his hand gently on her shoulder so they wouldn't get separated. When she got home, there was a bruise shaped like a handprint on her shoulder visible because she was wearing a tank top - she had to explain to her parents that everything was totally fine and her boyfriend had been very gentle. She thought it was a funny story.
Erica

Thanks, Erica!

Anecdotes like that one are the perfect human touches and will help me do more than just represent ITP with facts and figures!

Best,
Tiffany

So true, my son is like silly putty..any pressure against him he has the pattern in petechiae, and sometimes bruises.

Tiffany,

I sent you an email.

Jeffrey

Hello Tiffany,
A suggestion - ITP is referred to as a 'disorder' not a 'disease'.
Best wishes,
mj

Hi MJ,

Thanks for clarifying! I'd come across it listed as an autoimmune disease and was going off that.

This is really helpful and I apologize if my mistake was offensive!

Best,
Tiffany

Wow. It seems like there's a varying degree of sensitivity and the level of touch required to cause petechiae or bruises. Is this typical of your son ALL the time, or does his sensitivity vary with his platelet count?

Thanks so much!

Best,
Tiffany

It does vary with his counts, closer to 20 it is rare..He was in the teens slept on a chrocheted blanket woke up you could see every stitch of yarn and where holes were..But that was 8 hours, when he is below 5 it can take only minutes.

Oh, this anecdote is so helpful! I'm thinking I may adapt it for a cruicial scene in the book.

Thank you so much for sharing it with me!

best,
Tiffany

I laughed at Erika's story because when I developed ITP, my mother thought my boyfriend (now husband) was abusing me because of my bruises... I honestly didn't notice them until she pointed them out to me. LOL

I can definitely see how that would happen! LOL! Good thing you were able to convince your mother otherwise!

My daughter was 12 at diagnosis and hung around 5k most of the time. I remember I discovered that she had started shaving her legs because the razor gave her "stripes" of petechiae all up and down her legs!
April

My story would be rather boring. Even at counts of 3, all I ever really had was a large, black bruise and some petechiae. Never had any marks like that.

I was playing with my dog and she missed the toy and got my leg. No skin was broken but it was the hugest, ugliest bruise I've ever seen (before the ITP conference, I saw some great ones there.)
Erica

Around the time I was diagnosed, I fell down some wooden steps. I laughed it off, said "That'll bruise" and went to my parents for supper. A couple of days later, went to visit my sister and showed her the bruise; she measured it, it was 9.5 inches long, 3.5 inches wide and black as the ace of spades! Should have taken a picture of it.

Before we changed forum boards, I remember the horror story for one of the parents who posted on the board. They had attended a large conference with several thousand attendess in Altanta and taken their son who had ITP. He got separated from them and the security guard who found him noticed the brusing called the police and social services got involved and took him since they assumed abuse. Their doctor was in their home state and it took them over 24 hours to get the paperwork to confirm that it was a medical condition not abuse and work through the legal process to get him returned. They now travel with a letter from the his peditrician and other proof to explain his brusing.

I've had ITP for several years and had safe stable counts for most of them. One of the triggers that I needed to be checked when I dropped to treatment level was a bruise i got when doing some business traveling. I was juggling my breifcase, suitcase and purse in snowy chicago to board the bus to the rental car agency. It was one where it was the really high step to get in and I missed and really banged my shin against the bottom frame of the door. I was meeting coworkers, we had dinner plans and lots of activities during and after work hours, so i didn't pay much attention until about the 3rd day when I realized that it had drained to my ankle and the top of my foot and that both of the pair of shoes I had with me were snug and unconfortable against the swelling it caused. I'm sure that those who live with low counts have many similar stories.

Until the TPO drugs came out, I've always maintained the unless you had very low counts, the cures were often worse than the disease because of the side effects. I've never taken predisone and never want to after hearing the stories of others who have taken it. In fact, one of the reasons that I wear a medical id bracelet is because on of my perosnal fears is that some resident in an ER would give me predisone when I was unconscious and unable to particate in the discusion. So mine has the 800 number so they can contact my doctor.

How I describe myself the day I finally decided to go to the doctor:
Looked like I was beaten in a back alley with a 2 x 4

I think the worst thing for me [besides low count] was going into the office to get blood work done - most hematologists are oncologists - and I am sitting there in the treatment room waiting for a blood draw while around me are a few men and women receiving their chemo. That was very humbling!!

One time while in the waiting room a woman with no hair asked me how long it had taken for my hair to grow back. Bless her heart, she had breast cancer & was going through chemo and she thought I had too and wanted to know when she would get her hair back. That still brings tears to my eyes.

Also remember there are good stories too about ITP - not all are horror stories. And there comes a time when you aren't waiting for the other shoe to drop.

Thank you all for sharing these deeply touching, sometime humorous, personal stories with me. I really appreciate it!

Tiffany

Here is a story you might use -

Once, during a period of zero to nearly zero platelets I was looking at all the purple blotches on my forearm, feeling nervous about potential brain bleeds. As I was looking a little bump appears on my arm, about half the size of a dime. I was watching a spontaneous little bleed happening. Overnight this bump flattened and over the next few days a new purple blotch appeared where the bump was.... I thought- if that happens in my brain, I'm in trouble....

Mark

Tiffany,

I too have seen my son Dakota spontaneously bleed. With counts of 1 or 2 he bleeds from the corners of his mouth. We have had confrontations with individuals in public over Dakota's bruises. He would look like he had been beat. When his counts are lower, we can give him a hug or a kiss on his cheek and it produce a bruise and not just any bruise either--- a ugly deep purple bruise. It's quite unnerving. With Dakota too, there was a time when his platelets stayed under 20K for about 2 years. During this time, he was so ashen all the time and he didn't have any energy or appetite. For now, he does quite well, but it never leaves your mind. He really stresses because he's so different. He was dx at age 22 months and is now 11.5.

@Melinda, your right we should contribute that there are good stories too. I often find myself to be the wellest person the hemo sees that week or month when my counts are safe and stable. And we all learn to laugh at ourselves after we've been at it a while. I still laugh at my self for an incident where I put new sheets on the bed without washing them first and the sizing caused an allergic rash but just in case I went in for the counts. Without ITP, I might never have had as great an appreciation for those who do have to go through more severe conditions and look at all the great friends we've made online, at the support groups and the Annual convention.