Regina

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Welcome to Regina's Story

We like to ask all sorts of questions here, from the diagnosis story, to how patients with ITP sleep.  How they deal with stress and how they feel when their platelets are falling, appetite, mood and how their life has changed since ITP – Funniest or worst injury and how they manage ‘being sick’…  Every ITP story is different.  Enjoy.

A little bit about me

I live in Pennsylvania and have always enjoyed an active lifestyle. I also enjoy reading, playing piano, singing, horseback riding, and animals of any kind. ☺ I was born in January 2002.

How I was diagnosed and my journey so far…

When I was about 6 or 7 years old I started getting big bruises all over my body for absolutely no reason at all. My mom then took me to the doctor and he did some bloodwork. We got the results back late that night and my count was at 8,000.

The doctor thought I might have leukemia and told us to go up to Hershey right away. When we got there they did a lot of testing and early the next morning they informed us that I had ITP. They gave me IVIG which made my platelet counts go up to about 100,000 but they went back down a few days later and the treatment made me very sick /nauseous /headache /exhausted. This was during my first year of school.

After that they pretty much watched and waited. I had weekly blood tests taken, and went up to Hershey Medical every few weeks or so. After about 4 months of this, my platelet counts started slowly rising… but they never went back up to a normal count (150,000-400,000). They rose up to a stable area though of 60,000 to 70,000 and stayed there for about 7 years. During this time that my platelet counts were stable I lived a totally normal life and was able to be active again. Continue reading

Clarissa

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Feature image from CLARISSA

Hello, my name is Clarissa and I was diagnosed with ITP November 3rd, 2015. I currently live in Minnesota. I am a teacher and a single mom to 2 little boys ages 6 and 4. On Halloween morning 2015 I woke up with bruises all over my arms. I honestly didn’t know how I got them, but my family joked about how my youngest beat me up in his sleep (he co-sleeps with me and is a tosser).

I really didn’t think much of the bruises except that it was weird they were all over my arms, so we went trick or treating as planned. I hadn’t felt sick or tired or really anything out of the normal before this, so I wasn’t really sure what was going on. The next day I seemed to have developed more bruises on my legs, again brushing it off to my son’s tossing and turning.

On Monday when I went to work I found even more bruises and throughout the day they were getting darker and bigger. I called my doctor and she told me to get in to urgent care right away. After work I picked up my kids and headed in. They ran blood tests and my platelets levels came back at 0. Continue reading

Patient Guide to ITP, Health Monitor

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Featured image from GUIDE2ITP

Did you know the people who created ITP PLATELET TRACKER for your smartphone also produce an ITP MAGAZINE?  Well, they do, and the latest edition is available now.  You can download the magazine for free or ask for a printed edition to be sent to your home.

It contains lots of information about treatment options, managing platelet counts and questions to ask your haematologist. There are also a few stories from ITP patients and helpful lifestyle tips.

Guide 2 ITP is produced by the company AMGEN who make the ITP treatment NPLATE (Romiplostim). This is why the magazine contains ads for Nplate as an ITP treatment.

Here is the INTERVIEW I did with Health Monitor in WINTER 2015.

 

The Third Trimester of an ITP Pregnancy

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Feature image from PREGART

Read about the 1st TRIMESTER and 2nd TRIMESTER here.

Yes, if you haven’t heard, we are having an ITP baby and are already in the third trimester.  Yay!  Our focus is finally turning towards labor and birth which is very exciting.

Doctors – ITP Pregnancy, gestational thrombocytopenia, immune thrombocytopenia during pregnancy, breastfeeding with ITP, birth with ITP, ITP birth plan, low platelet pregnancyI am seeing doctors at the hospital every two weeks (Every other week at my GP) at the moment with ultrasounds every third to check baby growth and wellbeing.

The baby doctors are very different to what I expected.  There seems to be a myth going around the obstetricians are evil old men who treat women like dairy cattle, but I have yet to see that.  Our baby doctors are both hilarious women and young positive men.

We have not come across any evil maniac OB’s who want to induce us at the drop of a hat and have scheduled c-sections so they can spend all weekend playing golf.  No one has rolled their eyes at us when we mention delayed cord cutting, minimal monitoring, calm birthing and setting the mood. Continue reading

Sameena

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THE UNSUCCESSFUL SUCCESS STORY OF AN ITP PATIENT

I tried to stay away from regular use of steroids as much as possible. But like with any chronic disorder, medication is inevitable. And to think that 8 months ago, I was going about my normal life thinking I was healthy as a horse and all the while my immune system was planning an attack on my own platelets.

Although it is not like it sprang on me all of a sudden. Come to think of it, there were some signs of platelet disorder way early.

low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, bleeding disorderI guess it all started with the bruises. For 5 years, I thought they were just bruises. Random. I mean, you get a little round purple bruise on your leg every month or so, you don’t really worry about it. You give some lame explanation like: “maybe it’s the hormones from my menstrual cycle” or “maybe I just bumped into something and did not realise”.

About a year and a half ago, I noticed that the bruises were getting bigger and more frequent, which scared me a little but the bruises sort of faded away in a few days. Continue reading

A Patient Research Study about ITP

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I recently received an email from Partners, looking for ITP patients to participate in a study about treatments and experiences living with ITP. 

low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, bleeding disorderPartners, is a consulting firm located in Boston, Massachusetts (USA) working to understand people’s experiences living with Immune Thrombocytopenic Purpura (ITP) and your experiences with IVIG, SCIG, and TPE treatments. Your input will help focus research efforts to areas where they will have the greatest impact.

The goal of the study is to better understand your experiences in living with ITP and your treatment experiences with Intravenous Immunoglobulin (IVIG), subcutaneous immunoglobulin (SCIG), and/or plasma exchange (TPE, plasmapheresis).  Your responses will directly help our client – a healthcare company – make more informed decisions.

If you have had any of the above treatments and are interested in being compensated for your time, please contact Ben Shedlock  via email at BEN.SHEDLOCK@rarepatientvoice.com 

ITP Patient Market Research Flyer