ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to greta799@yahoo.com. We want to hear from you.

Thursday, March 21, 2013

Elaine Twohig Odriscoll shared a beautiful poem she wrote in the Facebook group,
ITP and Me.

She gave me permission to post here on our blog so everyone can read and appreciate the feeling she shares.


Today I will wake up into the unknown,
Everyday's a blessing but everyday I feel alone,
I wonder what tomorrow will bring
I pray it will be good,
Will I be bruise free or will there be Blood?                  

I know I have I.T.P but what will others think,
Even though I stand so tall
I feel so ready to sink,
I'm really tired now
I think I will lie down,
But as I look in the mirror
All I see is my Hospital Gown.

The Dream is over, I'm not free as a Bird
I'm hooked to my life saver Bottle after Bottle
And this is now my Third,
I'm in my second home, now a hospital suite for me
All the people in and out as busy as can be,
But I have things to do, my home, my job, my kids,
Doesn't I.T.P know that I have no time for this?

My treatment is over and I'm drained from day to day
I will feel much better in time or so the doctors say.
I want to run around and come and go as i please,
But I.T.P has other plans and it has me on my knees.

I can pray for a cure or a magic wand if so
I can always pray for strength and let ITP go.
So if you ever see me, don't ask me how I feel
Just know my battle is very Hard and very, very Real.

Thursday, March 14, 2013



This is a very interesting article from Prevent Disease.com. http://preventdisease.com/news/13/030713_Scientists-Officially-Link-Processed-Foods-To-Autoimmune-Disease.shtml


I thought some of you folks might want to comment on this....






March 7, 2013 by APRIL McCARTHY
Scientists Officially Link Processed Foods To Autoimmune Disease

The modern diet of processed foods, takeaways and microwave meals could be to blame for a sharp increase in autoimmune diseases such as multiple sclerosis, including alopecia, asthma and eczema.


A team of scientists from Yale University in the U.S and the University of Erlangen-Nuremberg, in Germany, say junk food diets could be partly to blame.

'This study is the first to indicate that excess refined and processed salt may be one of the environmental factors driving the increased incidence of autoimmune diseases,' they said.

Junk foods at fast food restaurants as well as processed foods at grocery retailers represent the largest sources of sodium intake from refined salts.

The Canadian Medical Association Journal sent out an international team of researchers to compare the salt content of 2,124 items from fast food establishments such as Burger King, Domino's Pizza, Kentucky Fried Chicken, McDonald's, Pizza Hut and Subway. They found that the average salt content varied between companies and between the same products sold in different countries.

U.S. fast foods are often more than twice as salt-laden as those of other countries. While government-led public health campaigns and legislation efforts have reduced refined salt levels in many countries, the U.S. government has been reluctant to press the issue. That’s left fast-food companies free to go salt crazy, says Norm Campbell, M.D., one of the study authors and a blood-pressure specialist at the University of Calgary.
Many low-fat foods rely on salt--and lots of it--for their flavor. One packet of KFC’s Marzetti Light Italian Dressing might only have 15 calories and 0.5 grams fat, but it also has 510 mg sodium--about 1.5 times as much as one Original Recipe chicken drumstick. (Feel like you’re having too much of a good thing? You probably are.
Bread is the No. 1 source of refined salt consumption in the American diet, according to the Centers for Disease Control and Prevention. Just one 6-inch Roasted Garlic loaf from Subway--just the bread, no meat, no cheeses, no nothing--has 1,260 mg sodium, about as much as 14 strips of bacon.
How Refined Salt Causes Autoimmune Disease
The team from Yale University studied the role of T helper cells in the body. These activate and 'help' other cells to fight dangerous pathogens such as bacteria or viruses and battle infections.

Previous research suggests that a subset of these cells - known as Th17 cells - also play an important role in the development of autoimmune diseases. 
In the latest study, scientists discovered that exposing these cells in a lab to a table salt solution made them act more 'aggressively.'
They found that mice fed a diet high in refined salts saw a dramatic increase in the number of Th17 cells in their nervous systems that promoted inflammation.
They were also more likely to develop a severe form of a disease associated with multiple sclerosis in humans.
The scientists then conducted a closer examination of these effects at a molecular level.
Laboratory tests revealed that salt exposure increased the levels of cytokines released by Th17 cells 10 times more than usual. Cytokines are proteins used to pass messages between cells.
Study co-author Ralf Linker, from the University of Erlangen-Nuremberg, said: 'These findings are an important contribution to the understanding of multiple sclerosis and may offer new targets for a better treatment of the disease, for which at present there is no cure.'
It develops when the immune system mistakes the myelin that surrounds the nerve fibres in the brain and spinal cord for a foreign body. 
It strips the myelin off the nerves fibres, which disrupts messages passed between the brain and body causing problems with speech, vision and balance.
Another of the study's authors, Professor David Hafler, from Yale University, said that nature had clearly not intended for the immune system to attack its host body, so he expected that an external factor was playing a part.
He said: 'These are not diseases of bad genes alone or diseases caused by the environment, but diseases of a bad interaction between genes and the environment.
'Humans were genetically selected for conditions in sub-Saharan Africa, where there was no salt. It's one of the reasons that having a particular gene may make African Americans much more sensitive to salt.
'Today, Western diets all have high salt content and that has led to increase in hypertension and perhaps autoimmune disease as well.'
The team next plan to study the role that Th17 cells play in autoimmune conditions that affect the skin.
'It would be interesting to find out if patients with psoriasis can alleviate their symptoms by reducing their salt intake,' they said.
'However, the development of autoimmune diseases is a very complex process which depends on many genetic and environmental factors.'
Stick to Good Salts

Refined, processed and bleached salts are the problem. Salt is critical to our health and is the most readily available nonmetallic mineral in the world. Our bodies are not designed to processed refined sodium chloride since it has no nutritional value. However, when a salt is filled with dozens of minerals such as in rose-coloured crystals of Himalayan rock salt or the grey texture of Celtic salt, our bodies benefit tremendously for their incorporation into our diet.

"These mineral salts are identical to the elements of which our bodies have been built and were originally found in the primal ocean from where life originated," argues Dr Barbara Hendel, researcher and co-author of Water & Salt, The Essence of Life. "We have salty tears and salty perspiration. The chemical and mineral composition of our blood and body fluids are similar to sea water. From the beginning of life, as unborn babies, we are encased in a sack of salty fluid."

"In water, salt dissolves into mineral ions," explains Dr Hendel. "These conduct electrical nerve impulses that drive muscle movement and thought processes. Just the simple act of drinking a glass of water requires millions of instructions that come from mineral ions. They're also needed to balance PH levels in the body."
Mineral salts, she says, are healthy because they give your body the variety of mineral ions needed to balance its functions, remain healthy and heal. These healing properties have long been recognised in central Europe. At Wieliczka in Poland, a hospital has been carved in a salt mountain. Asthmatics and patients with lung disease and allergies find that breathing air in the saline underground chambers helps improve symptoms in 90 per cent of cases.
Dr Hendel believes too few minerals, rather than too much salt, may be to blame for health problems. It's a view that is echoed by other academics such as David McCarron, of Oregon Health Sciences University in the US.
He says salt has always been part of the human diet, but what has changed is the mineral content of our food. Instead of eating food high in minerals, such as nuts, fruit and vegetables, people are filling themselves up with "mineral empty" processed food and fizzy drinks.

Study Source:
This is the result of a study conducted by Dr. Markus Kleinewietfeld, Prof. David Hafler (both Yale University, New Haven and the Broad Institute of the Massachusetts Institute of Technology, MIT, and Harvard University, USA), PD Dr. Ralf Linker (Dept. of Neurology, University Hospital Erlangen), Professor Jens Titze (Vanderbilt University and Friedrich-Alexander-Universitat Erlangen-Nurnberg, FAU, University of Erlangen-Nuremberg) and Professor Dominik N. Muller (Experimental and Clinical Research Center, ECRC, a joint cooperation between the Max-Delbruck Center for Molecular Medicine, MDC, Berlin, and the Charite -- Universitatsmedizin Berlin and FAU) (Nature, doi:http://dx.doi.org/10.1038/nature11868)*. In autoimmune diseases, the immune system attacks healthy tissue instead of fighting pathogens.
April McCarthy is a community journalist playing an active role reporting and analyzing world events to advance our health and eco-friendly initiatives.

Friday, March 1, 2013

Did You Wear Your Purple Yesterday?

Anthony Heard sporting his purple tie...
Yesterday was Rare Disease Day. Did you wear your purple to show support for ITP, one of the many rare diseases that plague our world?

Anthony Heard has been posting pictures on the ITP Foundation Facebook page. Take a look and see how ITPers have been sporting their purple.
https://www.facebook.com/pages/ITP-Support-Association/195007237228999

In the United States, sometimes people with rare diseases do not have the funds to obtain the treatments they need. There is an organization called NORD (National Organization for Rare Disorders) that may be able to help.

The following is some information from the NORD Website (http://www.rarediseases.org)


WHAT IS A RARE DISORDER?

Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. NORD is here to represent all patients and families in the U.S. affected by rare diseases.



WHAT IS A RARE DISORDER?

Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. NORD is here to represent all patients and families in the U.S. affected by rare diseases.



NORD PROGRAMS AND SERVICES

NORD provides information for patients and families, mentoring for patient organizations, advocacy for the rare disease community, research grants, and patient assistance programs.


MEDICAL ASSISTANCE PROGRAMS

NORD partners with pharmaceutical and biotechnology companies to ensure that certain vital medications are available to uninsured or under-insured individuals. NORD’s programs have set the standard for fairness, equity, and unbiased eligibility and earned high marks from patient communities, pharmaceutical companies, healthcare professionals, government officials, and the public.
NORD also administers co-pay assistance programs for people who can’t afford their insurance co-pays; early access programs that, following FDA guidelines, allow patients with serious or life-threatening diseases to access investigational products under certain conditions; and travel assistance programs, since patients with rare diseases often must travel great distances to participate in clinical trials.