Jeneva

ITP Pregnancy, gestational thrombocytopenia, immune thrombocytopenia during pregnancy, breastfeeding with ITP, birth with ITP, ITP birth plan, low platelet pregnancy
  • A little bit about you:

Hi, I’m Jeneva from New Zealand and I am 20 years old. I am currently a student at Waikato University studying Geography and Anthropology. I am newly diagnosed with ITP since June 2016.

  • How you were diagnosed:

It all began when I arrived home from university and I was watching a movie with my mum and sister. I began to feel sick, and got up to go to the toilet when I started bleeding heavily. I thought I was having my period, but in the space of an hour, I had gone to the toilet every 10 minutes literally peeing blood. That night was the worst. I had no sleep as I was up every 15 minutes peeing about a cup of blood. I started seeing changes in my body very quickly as I got extremely tired and dizzy, my legs were shaking every time I stood up from being so weak because they couldn’t support my weight, my eyes were blood shot, I began to get ulcers in my mouth, I had multiple nose bleeds, and my arms and legs formed red blood spots and were covered in large, deep purple bruises. These bruises, seven months later, are yet to fully disappear. This went on for four days, because I simply thought I was just having a really ‘heavy period’ and these were just random side effects that I was experiencing. When I realised it didn’t feel right, I decided to call my doctor. Continue reading

A Transverse Baby

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Feature image from SCIENTIFIC ILLUSTRATION

I know this is a little off the topic of ITP and Bleeding Disorders, but it was something I wanted to write about.  There isn’t much personal information onIine about transverse babies, and a few people keep asking me what it feels like to have a transverse baby, so I will do my best to describe it.

I’m currently at 36 weeks and our baby has been transverse for at least two months.

As this is my first experience with the third trimester, I have nothing to compare to, so for most of the day, everything just feels normal to me.  But I will try and break it down so it makes a little sense for people who are unfamiliar with the feeling of a transverse baby. Continue reading

John

Passenger plane above the clouds.

Feature image from HERE

A little bit about John…

Californian based international business consultant working in the Asia-Pacific region.

How were you diagnosed…

I was in Japan with my family on a business related trip in the Spring of 2015. Prior to our departure, I had bitten my check while sleeping and noticed that it continued to bleed. After checking into our flight to Tokyo, I noticed a large bruise forming on my left hand from where I had just been bumped by another traveler’s suitcase.

During the 9-hour plus flight, I began to feel tired and noticed I had what appeared to be a rash forming on my hands and lower arms. Upon arrival in Tokyo and after checking in to the hotel, I felt exhausted with a large headache (I travel extensively to Asia from the US, so this was unusual for me).

The next morning, after I woke up, I noticed I had what appeared to be blood blisters on my tongue as well as blood spots on the pillow case of the hotel pillow. As this was the weekend in Japan, my wife who is Japanese, suggested that we discuss this with a pharmacy (Note:  In Japan hospitals are only open for emergencies and not regular visits on the weekend).

This was done on a Saturday. The pharmacist stated that it didn’t look like an allergic reaction and I should see a regular physician. As the weekend progressed I continued to get more tired and the “rash” continued to spread on my arms and legs. My wife did some research on the internet and found information on ITP that seemed to cover my symptoms. Continue reading

Regina

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 disorder

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

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 disorder

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

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