Giving Chronic GI Illness a Voice

Blastocystis 'hominis' will cause severe symptoms in otherwise healthy individuals and families.  Blastocystis 'hominis' will cause diarrhea in anyone, but based on the most current work we are doing, genetic characteristics in individuals will cause this disease to become more severe, and people of Northern European descent are more likely to develop severe cases which can not be treated.

It's important to get a cure for this disease, because it's not just you who would be impacted - your kids, parents, and brothers/sisters are also more likely to get sick.

BRF is starting a project to collect audio testimony from patients to let public policy makers know about how serious this disease is.

Planning Your Audio Testimonial

1) Your testimonial can be up to 2 minutes, 30 seconds long

2) Please use a landline if possible and speak at a reasonable volume.

3) You DO NOT have to use your real name, but we would like you to leave some kind of name so we can later identify the script. 

4) You can choose how we use your testimonial.  You can choose to have the audio made available publicly to anyone who visits our website.  You can also choose to make it available only to journalists and government/public health officials.  Additionally, at any time, you can ask us to remove your audio testimonial from our web site.

Sending us your testimonial

1) Call our telephone number:

2) Start your audio testimonial with a statement like this:

"My name is Jane.  I am calling from California.  You can make this audio available publicly."

or

"My name is Joe.  I am calling from Washington.  You can make this audio available only to public officials."

You do not have to use your real name.  We would like to know which state you are from, because we are pushing Congress to address this problem.

Right now, we would include a text transcript of your testimonial on our public web site, unless you ask us not to in your testimonial.

3) Please continue with a statement like this:

"I have been sick since 2003.  My test was positive for Blastocystis 'hominis' in 2004."

If you do not have a positive test, please say that.

4) Other information we would like to hear about:

• Personal, emotional impact on you and your family.
  
• Symptoms.  DO NOT worry about grossing people out.  This disease is NOT your fault.   Tell them about not being able to make it to the toilet, or the 10 bowel movements per day, or the long stringy ribbon stools.  The NIH and CDC have plenty of money to address this.  Make them feel your pain. 
  
• Have other members of your family developed illness?
  
• Have you been treated with antibiotics?
  
• Have you seen a large number of doctors?  Have they ordered expensive tests?
  
• Do you have health insurance?
  
• Have you spent your family's savings on this?
  
• Have family members had to go into psychiatric counseling after contracting this disease?

5) We're also interested in knowing about your genetic background - mainly, what countries your ancestors came from.  We've noticed that people with serious illness often have relatives from Northern Europe and Scandinavia.

6) Remember - our machine cuts off after 2 minutes, 30 seconds.  If you would like to speak more, you will need to split your testimony up into sections and call back a few times.  You could do one section on symptoms and one on the costs for example.

THANKS!