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Showing posts from November, 2012

Book News! Show your support and read a great book.

BULLETIN.......
APF  Patient Meeting In Atlanta Is Fast Approaching!

Saturday, December 8th 201210:00 AM - 12:00 PMHampton Inn Atlanta-Buckhead3398 Piedmont Road NEAtlanta, Georgia 30305TEL: 404.233.5656RSVP to Yvette at porphyrus@aol.com  or  call 1.866.APF.3635

For more information about the meeting go to: 
http://www.porphyriafoundation.com/news/APF-Patient-Meeting-Atlanta


We hope to see you there!
______________________BOOK  NEWS.........
"What Happened To Mr. Bennett?"
Daughter of a Man who lived with CEP writes a book about her father to bring awareness to Porphyria.Monica Bennett Firchow has written a book about her father , Gene Bennett, who had CEP.   It is a fascinating story of a man who lived life to the fullest despite the tragic impairment from CEP.  Disregarding Gene's severe photosensitivity and subsequent devastating skin damage, Gene was a rancher, pilot, sports and dog show photographer, parishioner, not to mention a wonderful friend, husband and father.  He w…

A glimpse into a Doctors efforts to help someone with a Rare Disease

We would like you to read about Dr. Jeremy Latimer and his experience so far with medical schooling and his personal challenge in helping a patient get tested for Porphyria and to find them to help them.  I would like to first of by stating we appreciate your time and efforts to help support patients with rare diseases.  Here is Dr. Latimer's background.As for my background. I am a 35 year old resident in Internal Medicine at Florida State University/Tallahassee Memorial Hospital.  I became interested in the Porphyria a little over a year ago when one of my patients displayed all of the classic signs of acute intermittent porphyria. I decided to seek out patients with Porphyria on Facebook, to learn more about the disease and to answer questions in regards to patients' experiences that can't be found in textbooks. Unfortunately, by the time I had become convinced that my patient may have AIP, he had checked out of the hospital AMA due to frustration.  It seems to be a comm…

Extremly Important~ National Porphyria Registry

Your participation in the national Porphyria Registry is EXTREMELY Important to Porphyria research.  The Registry is NOT the same thing as joining the APF, instead, it is a site which goes directly to the Porphyria Consortium of experts.

We NEED Your participation!  We are in need of Acute Porphyria Patients to join.  So if you have Acute Porphyria please visit www.porphyriafoundation.com and click on Porphyria Registry and  follow the instructions, it takes but just a few moments of your time.
Once you register you will be contacted by phone or email to answer additional questions to verify your participation in the studies.  Participation in research does not mean you have to take any experimental drugs, rather you can answer questions about porphyria. 

 These research projects are critical to your care now but in the future for family members or someone you know.  These projects also determine the incidence of porphyria in the US.

So now it's up to you!  Will you do your part it do…

Important We NEED YOU!

The Porphyria Research Consortium met in Boston last week. They are involved in much research for every type of porphyria. In addition, they told me that they really need more patients to register on the registry (this is a means for us to tell the govt that we need research funds) and to answer the research questions. There is a second set of questions posted, too, that they need everyone registered to answer as part of the long study 5 years.

www.porhyriafoundation.com 

or call 866-apf-3635

APF Patient Meeting In Atlanta! Can you be there?

APF Patient Meeting in Atlanta!
Saturday, December 8, 2012
10:00 AM to NoonWith Renown Porphyria ExpertDr. John D. PhillipsLocation to be Announced Shortly via Enews
*  Opportunity to Participate in a Q & A Session with a Porphyria Expert*  Meet other Porphyria Friends Who Share Your Experiences*  View the Latest APF Educational Materials
RSVP to Yvette, porphyrus@aol.com or Call the APF Office 1.866.APF.3635Seating is Limited

VOLUNTEERS NEEDED For the APF Exhibit Booth At the "American Society of Hematology" Convention - ASH Georgia World Congress Center, Atlanta, Georgia December 8 - 11, 2012

As a volunteer, you will distribute medical information to the 8,000 doctors and other health professionals who attend this prestigious convention. This is a wonderful opportunity for APF members in the Atlanta area to support the need to educate physicians about porphyria. Together we can enhance awareness and education of the porphyrias.  If you would like to be a part of this excitin…

Boston Meeting Notes~ From Desiree Lyons

The Boston meeting was a wonderful opportunity to help people who wanted to understand porphyria better and to help them with their own cases, as well as for those who wanted to gain a correct diagnosis.
The meeting, hosted by the APF and Dr. Peter Tishler, was held in the Shapiro board room of the Brigham and women’s hospital in Boston.  After everyone introduced themselves, Dr. Tishler, who is a porphyria expert/genetics at Harvard, gave a presentation about the porphyria and then opened the floor to the attendees to discuss their cases and ask pertinent questions that we hear very often.  For example, people everywhere have trouble finding primary care physicians and emergency rooms doctors who are knowledgeable about the porphyrias.  Treatment and diagnosis questions also abounded.  Dr. Tishler gave the attendee excellent suggestions for each of their situations, as well as clarified much misinformation about diagnosis and treatment.  The PBG urine test for the acute porphyrias was…

The APF has been working with a rare disease coalition to assure patients of their rights to view their test results. below is our position Our position.

The APF has been working with a rare disease coalition to assure patients of their rights to view their test results. below is our position 
Our position. We fully support the proposed Rule. Our reasons include:

• First and foremost, granting patients direct and timely access to test results will
improve clinical care and patient outcomes. Patients can respond faster and more
appropriately when they learn their test results quickly. For example, it is not unusual
that the appropriate response to a particular lab result is to make an appointment with
a relevant specialist or take other actions. But difficulties in reaching the ordering
doctor may unnecessarily delay appropriate next steps, as well as create unnecessary
stress during the “phone tag” period.

• Even worse, some patients are being harmed by never learning of their lab results.
Approximately 7% of clinically significant test results – tests that would have a
potential impact on clinical care – are never reported to patients, potential…

APF Meeting in Atlanta. Can you help?

APF Patient Meeting , Saturday, December 8, 10 am to Noon.  The Exact location in Atlanta to be announced shortly.  Porphyria expert and researcher, Dr. John Phillips, from the University of Utah Porphyria Center will be speaking and answering questions.  More information to come.  Circle the date and RSVP to the APF office.  713.266.9617.We also need volunteers to help with the exhibit booth at the American Society of Hematology convention in Atlanta, December 8-11.   You will be distributing medical information to physicians and other health professionals.  This is a great opportunity to help educate doctors about Porphyria on a grand scale.   Your help is needed!
"Remember.....Research is the key to your cure!"

Dan Yelen's Paintball Explosion! Thank You for your support!

Dan YelenThis past Sunday was possibly the roughest day ever for me to keep my composure. I couldn’t tell you how close I was to crying through out the day. I have never dealt before with the amounts of kindness shown to me, my mother, or the American Porphyria foundation. Multiple people went out of their way to help support those with Porphyria. This includes not just the players, but the event’s field host, and our donating sponsors as well.

Thank you, Tj Smash Andres and his awesome field, Paintball Explosion for hosting our benefit game. Without you this would have never happened. Also, thank you for donating your items that each included free admission passes for your field. Also, thank you to the Saints Pbteam for helping me advertise the event, as well as my team mates Chicago Heretics

Thank you to Valken Sports and Nicole Smith-Kinner, Matt Osborn and Aurora Oil & Lube, Punishers Paintball, LAPCO Los Angeles Paintball Company., The Chicago Hist ory Museum, and Zach Fusco fo…

Time Change Fall Back!

Please don't forget to FALL BACK 1 Hour this Sat. PM
Change your phones, clocks and alarms.

Read about Darlene Folkes & PCT

Darlene Folkes

A New Doctor, and Help for PCT
Darlene Folkes is 44 years old, married, with two children. She lives on beautiful eastern Long Island, New York, which pokes out past the Long Island Sound and towards the Atlantic Ocean. Living out there, having two children to look out for, and working as teaching assistant in a local school Darlene has plenty of opportunities to be exposed to the sun.
Exposure to the sun eventually marked Darlene's symptoms unambiguously last Spring, but they started before that, with tea-colored urine, prompting her primary care physician to send her to a rheumatologist to be evaluated for possible lupus. While she was seeing the rheumatologist, her primary care physician became concerned about her gallbladder. It was in the process of getting ready to have her gallbladder removed that Darlene started getting a lot more exposure to the sun.
Wanting to lose a little weight and get in better physical condition, she started spending more time walking …