How Often Should I Ask My Friend how She’s Doing?

Blood disease itp, itp platelet disease, itp autoimmune disease

My dearest friend has ITP.

I have written about ITP and Friendship before here.

Her platelets fluctuate as do her doses of medication, access to good and bad information, her levels of being tired and in turn her mood. Each day that she wakes up she has ITP, and it isn’t going away any time soon.

Meanwhile I go about my business, working, moving houses, seeing friends, working on different projects, all with my (for now) reasonably healthy body to take for granted. I wonder about my friend often. I wonder if she has been to the doctor lately.  I wonder what her blood count is, I wonder how much prednisone she is on, I wonder how much she wonders about it all. I see her posts pop up on her blog about living with ITP and it reminds me, sometimes shocks me, that she is still living with ITP. I say shocking because often when shit things happen in your life you buckle up, breathe in, and try your best to move through them and come out the other side. We have all done this – buckled up, heard the bad news, cried and let the event finally pass by. But this one isn’t going to go away.

Each day she continues to wake up with ITP.

So my wondering has led me to ponder a couple of questions.

How often should you ask your ITP suffering friend how they are doing, not wanting them to not feel alone and forgotten in it?

How much do you allow them to remember and how much do you help them forget?

Living with ITP, What is ITP, family and friends, ITP friends

Azaria

Azaria-Smallimage

 

Autoimmune Low-Blood-Platelet Disorder

A Mother’s Perspective

Diagnosis

In early 2013, we noticed our two year old, Azaria, had a lot of bruises on her legs and arms.  She also had bruising on her spine and had a black bruise on her cheek, which she didn’t remember getting.  She was tired and falling over a lot. We took her to the doctor and asked for a complete blood count. Her platelets were very low at 19,000 per ml.

That was the start of her journey through the hospital system, including many blood tests (up to four times per week initially), x-rays, CT scans, emergency trips in an ambulance and a bone marrow biopsy until finally she was diagnosed with Immune Thrombocytopenia.

What Caused This?

ITP is not genetic and not contagious; it is likely that a virus caused her disorder (although we cannot know the cause for certain). ITP occurs when, due to a defect in the immune system, antibodies attach to platelets because parts of the platelets look like a virus or bacteria the body is fighting1. Where ITP occurs in children, 50% recover in 3-4 weeks, 75% in 6 months and 90% within 12 months. Chronic ITP is arbitrarily defined as thrombocytopenia that persists for 6 months or more2. Azaria’s ITP is considered chronic, as it is over 18 months since the diagnosis, and may continue into adulthood. Azaria’s blood platelets fluctuate but are often under 20,000 per ml of blood.

Sleep / Fatigue

Azaria gets tired and fatigued and sometimes falls asleep at the dinner table with her head in her food. She has had light sensitivity and pain all over her body for over 18 months, and – when the symptoms are at their worst – even stroking her hair hurts her.  We don’t know if the pain in her body and light sensitivity is caused by ITP or not, so doctors are continuing to do tests to see if they can find the cause of her pain. Sometimes Azaria has a sore mouth and doesn’t want to eat or drink; she also says she’s too tired to eat and says eating makes her tired.  She also has issues with her bowel.  Although she doesn’t always look sick, it doesn’t mean she isn’t. Continue reading

Helpful Links to ITP Support

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp. Famous people with itp, celebrities with itp, low platelet count,

Talking Red (#talkingred) From the Haemophilia Society UK

Talking Red is the Haemophilia Society UK’s new campaign to get women talking about bleeding disorders.  A bleeding disorder is a serious life long condition often requiring daily treatment and specialist care.  Many people don’t know they have a bleeding disorder.  In fact, tens of thousands of women across the UK are living with the symptoms of a bleeding disorder without even knowing it.

 

Platelet Disorder Support Association – PDSA

The Platelet Disorder Support Association, founded in August 1998, is an American non-profit corporation that provides information and support to encourage research about ITP and other platelet disorders. This organization is devoted to offering the most timely, accurate, and comprehensive information about ITP and platelet disorders. These guys are the ones that sell the Purple Bracelets for September 28th, ITP Awareness day.

itp help, itp information, itp and kids

The ITP Foundation, For Children With ITP

The ITP Foundation is another American non-profit organization established to raise awareness of Immune Thrombocytopenica. The mission of the ITP Foundation is to increase awareness and improve the diagnosis and treatment of children and adolescents with Immune Thrombocytopenia. The ITP Foundation helps to raise funds to further ITP research.

Australian Centre for Blood Diseases  – ACBD

itp information, itp help, treatment, support

The Australian Centre for Blood Diseases aims to provide excellence in the diagnosis and treatment of blood conditions as well as play a leading role in the advancement of knowledge in this increasingly important area of Medicine.  The ACBD is involved in research programs, clinical trials and patient education as a connected research centre of Monash University.   The ACBD also has an active Eastern Clinical Research Unit.

Journal of the American Society of Hematology

itp information

While these articles can appear quite dense and hard to interpret, there is a great deal of information to be found in this online journal.  This is where the current research is being publishing in relation to ITP and other blood disorders.  There are also clinical trial results presented for the first time and active discussion about relevant issues such as blood donations, medical insurance and the role of the spleen in immune function.  There are also some very positive articles about the possibilities of itp and pregnancy if you can find them.  This site can be a bit hard to navigate, but it is worth your while.

 The ITP Support Association – UK

itp support Association uk

The ITP Support Association is an independent UK registered charity which aims to promote and improve the general welfare of people with Immune Thrombocytopenia by providing support and information to patients, their families, and health professionals. This website receives no external funding or sponsorship.  These are the guys that got ITP discussed in the House of Commons.  Well Done.

ITP New Zealand

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp. Famous people with itp, celebrities with itp

A Support group for those patients and their families living in New Zealand with ITP.  Started in 2014 by Wendy Grace Allen, the group was created as a place for ITP patients to connect with each other.


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