The low down from the ITP Support Association Convention!

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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,A guest post from KATIE MELOY 

from MEMYSELFANDITP

Today I attended the 20th Anniversary and convention of the ‘ITP Support Association’. I was very eager to attend after very recently being diagnosed with the condition. I’m pleased to say that I was not disappointed and would urge anyone looking for support, help or information to attend.

The convention catered information in all aspects of ITP: from pregnancy, childhood and adult ITP and also different severity’s (acute, persistent and chronic ITP). It was a very laid back open atmosphere where every question, opinion and experience was valued. Continue reading

ITP Conference 2014

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 An International ITP conference will be held in a couple of days at Manhattan Beach, California.  The conference, aimed at patients, caregivers and the medical community will be held from July 11th to the 13th at Manhattan Beach Marriott Hotel.

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The 2014 ITP Conference will be held at Manhatten Beach, California

It will be the 14th Conference of it’s kind organised by the wonderful people at PDSA America, The Platelet Disorder Support Association.

The three day program will include authors, researchers and clinicians who all have a strong interest in helping ITP patients.  There will also be PDSA Medical Advisors who will present programs at the conference.  This conference provides a great opportunity to hear the latest information on ITP, meet others who are coping with ITP, and receive answers to any questions you might have. It is also a wonderful opportunity for carers of ITP children to meet other people caring for ITP patients.  There will also be a patient mixer on Friday evening and a special family-oriented party Saturday evening.

The Full Program for the Conference can be found on the PDSA website.

It will be a great opportunity, if you have a chance to go.

We are particularly interested in this presentation by Martin L. Rossman titled, If You Can Worry Yourself Sick, You May Be Able to Imagine Yourself Well?  Dr Martin Rossman is a pioneer in mind-body medicine. He is the founder of The Healing Mind, the co-founder of the Academy for Guided Imagery, a Clinical Faculty member at the University of California San Francisco Medical School, and an advisory board member of Dr. Andrew Weil’s Integrative Medicine Program at the University of Arizona. 

For the Complete List of Speakers who will be attending the Conference in 2014 Click Here. 

Registration

ITP conference 2014I believe there is still time for you to register if you are going to be in the area.  If you would like to Register for this years Conference simply follow the link.  

If you have any questions or require assistance while completing the registration form, please contact the PDSA office  at (301) 770-6636 or (877) 528-3538 or via email at pdsa@pdsa.org.

 

 

 

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

Did You Know There is an ITP Conference?

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Feature image from PDSA

I have stolen all of this information straight from the ITP CONFERENCE 2014 Homepage.  If you are interested in reading more, please check them out now…

ITP CONFERENCE 2014
July 11-13 – Manhattan Beach, California

PDSA will present the 14th annual update on immune thrombocytopenia (ITP) for patients, caregivers, and the medical community July 11-13 at the Manhattan Beach Marriott Hotel in Manhattan Beach, California, just 3 miles south of LAX Airport and 2 miles from the beach.  This year’s conference will provide an excellent opportunity to meet patients and doctors who support the PDSA and want to learn more. With the overwhelming success of last year’s meeting in Washington, D.C., we anticipate a great turnout of patients, family members and medical professionals as we head to the west coast.

itpconference2014

Our three-day program will feature renowned authors, researchers, and clinicians, all with a strong interest in helping ITP patients improve their health. Once again, many of the PDSA Medical Advisors will present programs at the conference. You don’t want to miss out on this tremendous opportunity to hear and talk with these world-renowned ITP clinicians and researchers. Each year the conference provides opportunities to hear the latest information about ITP, meet others who are coping with ITP, and receive answers to your questions.  A highlight to this weekend will be a patient mixer on Friday evening and a special family-oriented party Saturday evening. PDSA realizes how important it is to offer patients and families a respite from dealing with a chronic illness while bringing a little joy and laughter into their lives.  In addition to the educational programs and social events, we will have programs for children and teens, our Kid’s Kamp, and an early morning gentle exercise program to start the day off right!

To reserve your place, or to find out more details follow this link.