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This blog is dedicated to all the Porphyria patients worldwide. The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org
Thursday, June 27, 2013
UPDATE: Dr. Peter Tishler and APF Drug Database
Wednesday, June 26, 2013
Living with a Disorder
Living with a Disorder
A friend asked me to help them understand my disorder and how I live with it. Please feel free to comment. I would like your input to see if this help people understand.
Imagine that you lived in a world with ONLY peanuts... All their was to eat was peanuts, you worked at a factory that processed peanuts, you grow peanuts at home to save money and there is no way to avoid peanuts 100% Now imagine your allergic to peanuts. Every time you smelled peanuts you broke into hives. Every time you touched peanuts it burned your skin like pouring hot wax on it. And God for bid you ate one.....(but remember peanuts are the only food source around) it would cause uncontrollable nerve vibrations, shivering, burning, itching, swelling, scaring, and pain that is so bad your brain wont let you body sleep.
Where would you find the power to wake up every morning and go to work and provide for your family?
Where does this strength come from knowing you will be in severe pain for days, weeks or months?
How do you survive without any help from friends or family?
Life with a disorder sucks!!!!! But I guess its still a life.
I hope this helps you understand.
Victor has EPP.
In talking with Victor I really hope that those with a Disorder reach out to their families and friends. They may hear you express that your ill or not feeling well but ask yourself: Do they really understand my disorder and how it affects me daily?, Can they help me? If so how?
Sometimes some may say your crazy, stop complaining about it, get on with your life. Some may do nothing at all. But stop for a moment this disease/disorder you have your not the only one that suffers family, friends, associates everyone suffers. So be proactive with your spouse, children do what you can talk about during family time, make it a point to interact with family and friends the best you can when you can. Have a positive attitude and do your best and try.
"Remember.....Research is the key to your cure!"
"Remember.....Research is the key to your cure!"
What One Woman Can Do
Jennie Eberhardt
Type of Porphyria:
Acute Intermittent Porphyria (AIP)
What One Woman Can Do

Jennie’s career also encompassed beauty pageants and image consulting; an active life to be suddenly halted when she developed severe chemical sensitivities. Then she was also diagnosed with AIP. But Jenny "made lemonade" out of her mound of lemons by changing from a career of sales and marketing to a "ministry" of promoting porphyria awareness and education. As a very active Sponsor of the IN TOUCH network, Jennie has provided a loving shoulder for many of our APF Sponsors.
"Remember.....Research is the key to your cure!"
Ho well do you rank your sleep?
I believe that 7 hours of sound sleep are the perfect amount.
Now for some of us 6 may be good, 8 may be better. I have listed below how I
rank every hour of sleep. Read it over and tell me if you agree, disagree or
have your own ideas for ranking every hour of sleep. Enjoy!
Hour 7: Perfect ammount
Hour 6: still a good amount but you wake feeling like you dont want to get out of bed.
Hour 5: You definately did not get enough sleep but give me my mocha java and i'll be fine.
Hour 4: I have to get up after 4 hours? Okay fine but I better have my own whole pot of coffee waiting for me!!!
Hour 3: Really? Are you serious? I better have a really good reason to be getting up after 3 hrs of sleep!
Hour 2: At 2 hours of sleep why does one even try to go to sleep? I mean all it is at this point is a cruel dirty trick. Good luck haveing day thats anything above mediocre!
Hour 1: You simply dont sleep. It's like when you lay down for a nap and yet cant fall asleep. Why did you even try" you ask yourself?
Now for those times when you get to sleep over 7 hours.
Hour 8: You must have been able to sleep in. You wake up feeling totally refreshed and think yes, today will be a good day.
Hour 9: This must be a Saturday morning and you have no plans to be able to sleep this long. But its a good thing! Scooby-Doo, Looney Toons, or watching that episode of "The Office" that you DVR on thursday. Your the envy of everyone who has to work that day.
Hour 10: Am I sick to stay in bed this long!
Hope you enjoyed reading this and found it amusing.
Have a wonderful week everyone!
Hour 7: Perfect ammount
Hour 6: still a good amount but you wake feeling like you dont want to get out of bed.
Hour 5: You definately did not get enough sleep but give me my mocha java and i'll be fine.
Hour 4: I have to get up after 4 hours? Okay fine but I better have my own whole pot of coffee waiting for me!!!
Hour 3: Really? Are you serious? I better have a really good reason to be getting up after 3 hrs of sleep!
Hour 2: At 2 hours of sleep why does one even try to go to sleep? I mean all it is at this point is a cruel dirty trick. Good luck haveing day thats anything above mediocre!
Hour 1: You simply dont sleep. It's like when you lay down for a nap and yet cant fall asleep. Why did you even try" you ask yourself?
Now for those times when you get to sleep over 7 hours.
Hour 8: You must have been able to sleep in. You wake up feeling totally refreshed and think yes, today will be a good day.
Hour 9: This must be a Saturday morning and you have no plans to be able to sleep this long. But its a good thing! Scooby-Doo, Looney Toons, or watching that episode of "The Office" that you DVR on thursday. Your the envy of everyone who has to work that day.
Hour 10: Am I sick to stay in bed this long!
Hope you enjoyed reading this and found it amusing.
Have a wonderful week everyone!
"Remember.....Research is the key to your cure!"
Monday, June 24, 2013
APF History
APF History

At the time, Desiree was a very sick young woman undergoing treatment as an inpatient at the National Institutes of Health in Bethesda, MD. The physician-scientists treating her had explained that Acute Intermittent Porphyria was causing the horrible pain she felt, along with seizures and other neurological disturbances, immense swelling and rigidity of her abdomen, and other alarming and life-threatening symptoms.
As so many of us do when we are first diagnosed, Desiree sought more information about her condition, written in language she or any other person without a medical degree could understand. She got permission from her doctors to walk herself and her IV pole down to the hospital’s medical library every day and began reading everything she could find on porphyria. And from that simple beginning, this nearly-30 year old organization was born.
One of the APF’s earliest efforts was joining with other rare disease advocates to form the National Organization for Rare Disorders (NORD), and testifying before Congress in the same year in support of the Orphan Drug Act (1983). Panhematin®, which remains the only specific treatment for acute porphyria available in the United States, was the first drug to be approved under the ODA.
Since then, we have published materials on all the porphyrias for a patient audience; developed a comprehensive website and the educational DVD Porphyria Live; educated doctors at medical conferences, and through mailings and in-hospital seminars; helped thousands of patients in the U.S. and internationally find their way to diagnosis and treatment; served as liaison between the patient/primary care and research communities; and continually sought funds to improve research and training, diagnosis and care for the porphyrias.
"Remember.....Research is the key to your cure!"
Are You Pooping Wrong?
Ok! I know this not a subject anyone wants to talk about but it's a real thing that happens to us with Porphyria or not here are some suggestions I found that make going good. Enjoy!
Are You Pooping Wrong?
By worldwide standards, Americans are in the toilet on elimination practices.

Our ancestors did it. People in Asia, Africa, and some parts of Europe still do it. So how did we Westerners end up deviating from the best way to go No. 2?
Blame it on toilets as we know them. Thrones, they have been called. Turns out we should squat, not sit.
In a 2003 study, 28 healthy people volunteered to time themselves doing their business in three alternate positions: sitting on a standard toilet, sitting on a low toilet, and squatting. They not only recorded how long it took them, but also how much effort it took. Squatting, the study concluded, takes less time and effort.
"There is definitely some physiologic sense to squatting," says gastroenterologist Anish Sheth, MD, co-author of the books What's Your Poo Telling You? and What's My Pee Telling Me? "Simply put, it straightens out the colon."
When we're standing, the colon (where waste is stored) gets pushed up against the puborecatlis muscle, which keeps fecal continence until it's time to hit the bathroom. Sitting down only partially relaxes that muscle. Squatting fully relaxes it, essentially straightening out the colon. That, in turn, eases the elimination pooping process.
Experts have argued that digestive illnesses like colitis, constipation, and hemorrhoids stem from all the sitting and straining people do on the toilet. Studies have shown, for example, that the more time you spend in the bathroom, specifically reading, the more likely you are to develop hemorrhoids, or swollen blood vessels in and around the anus. Some doctors even recommend patients try squatting to deal with their colon issues.
Squatting toilets are used throughout the world today. In Asia, public restrooms might offer two stalls with Western porcelain flush toilets, and two stalls with squat toilets in which the user plants their feet over an opening in the floor and squats. "Turkish" toilets can be found elsewhere, including Japan, Russia, and France.
While Sheth doesn't now advise his patients to try squatting, "I probably should," he says. "I guess until now there wasn't a safe way."
Sheth was referring to SquattyPotty, a product released last fall that looks like a step stool. Users place their feet on it while sitting on the toilet, enabling a 35-degree angle squat.
What do you think? Will it catch on in the United States? Tell us in the comments!
"Remember.....Research is the key to your cure!"
Tuesday, June 18, 2013
Have you joined the APF In Touch Network
Join APF In Touch
Because porphyria is a rare disease (defined as affecting fewer than 200,000 sufferers in the U.S.), many newly diagnosed patients have never even heard of the condition before, let alone met someone else who suffers from it. We created the APF In Touch network to meet this need.
APF membership includes access to the In Touch network, through which members can contact others around the country who are dealing with porphyria. Some members form lasting friendships via email, telephone or old-fashioned letters. Others prefer to reach out to members in their region and organize face-to-face get-togethers.
If you are seeking support and fellowship, or are willing to be there for others who are dealing with porphyria, please fill out and send in the In Touch consent form to our address below. For more information on the APF In Touch network, contact Mira at the APF office: 866-APF-3635 or 713-266-9617.
American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056
Call the APF 866-apf-3635 to join now!
"Remember.....Research is the key to your cure!"
APF membership includes access to the In Touch network, through which members can contact others around the country who are dealing with porphyria. Some members form lasting friendships via email, telephone or old-fashioned letters. Others prefer to reach out to members in their region and organize face-to-face get-togethers.
If you are seeking support and fellowship, or are willing to be there for others who are dealing with porphyria, please fill out and send in the In Touch consent form to our address below. For more information on the APF In Touch network, contact Mira at the APF office: 866-APF-3635 or 713-266-9617.
American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056
What the In Touch network has done for me:
I want to share my experience with the In Touch network provided to us by the Foundation. I was diagnosed with AIP after 18 months of symptoms. You know the severe abdominal and back pains with fatigue and nausea. You all know the drill. The scariest part was the rarity of this disease. Every doctor tells you they're not that familiar with it, and very little was actually known about it. People look blankly at you when you try to explain how you feel. I don't have to elaborate to you all that also have it. So I decided to communicate with someone else that had this illness.
This was back in 2001, the time before the wonderful website that we are so blessed with now. So I opened the newsletter and looked at the names before me. I knew that I wanted someone that also had AIP. So I closed my eyes and asked God to help me chose the right one. I opened my eyes and there she was. Lori Brown from Madison, Alabama. I am from Arkansas so she was geographically close to me. I emailed her and introduced myself to her, telling her all of my experiences so far and asked if she would like to share "war stories." She emailed back and was more than happy to do just that. So over the next 7 years Lori and I battled porphyria together.
After a while Lori and I began calling each other on the telephone. Some of our conversations lasted for two hours! We discussed how the disease affected our marriages, children and our lives in general. I don't know if it was misery loves company but I can tell you she helped me so much. To have someone who understands what you are going through is great. I didn't feel alone.
On October 16, 2008 Lori Brown from Madison, Alabama passed away. The battle with porphyria is over. She is free. I never got the privilege of seeing her face or giving her a hug. But she was one of my best friends. So if you are thinking about getting in touch with someone and just haven't done it yet I encourage you to find yourself a Lori too. Find several. I have others as well: Rose, Mira, Judy, Jennifer and Troy. Or attend a meeting scheduled near you. Or reach out and host one yourself. I can assure you it will be a fulfilling experience.
Karen Eubanks
Conway, AR
Call the APF 866-apf-3635 to join now!
"Remember.....Research is the key to your cure!"
Have you called yet?
Telemedicine Consultations
If you need to consult with a Porphyria specialist and are unable to do so because of the distance to a Porphyria center, you now have the opportunity to consult electronically.
A Porphyria specialist and member of the APF Scientific Advisory Board, Dr. Karl Anderson, will be consulting with Porphyria patients via a telemedicine service from the General Clinical Research Center of the University of Texas Medical Branch at Galveston.
To access this service, you need to first locate a video teleconferencing facility in your community. These facilities are often found in libraries, businesses, universities and research centers. Unfortunately, neither the APF nor Dr. Anderson can provide you with a list of facilities with teleconferencing capabilities. Next, call Dr. Karl Anderson (409) 772-4661 to arrange for an appointment and to find out what information you might need to have ready prior to the telemedicine visit.
During the teleconference, Dr. Anderson will discuss your case with you just as he would during a regular office visit. This project was funded in part by a grant from the American Porphyria Foundation.
Physician Information Kit Available
Upon request, the APF will send a comprehensive physician education packet on the acute porphyrias to physicians. It includes educational materials on the diagnosis and management of the acute porphyrias; information on biochemical and genetic testing; Panhematin treatment for the acute porphyrias; and a recent article from the Annals of Internal Medicineon diagnosis and management of the acute porphyrias. Please call our office at 713-266-9617 to order the kit.
In addition, the APF will also send information on PCT and EPP to physicians upon request. Please call our office at 713-266-9617 to order the packet.
These packets are delivered via USPS, for physicians only.
"Remember.....Research is the key to your cure!"
Lots of Americans Want Health Care Via Smartphone
Lots of Americans Want
Health Care Via Smartphone
TUESDAY, June 18 (HealthDay News) -- Plenty of Americans are eager
to use their mobile phones and tablet computers to better manage their health
care, a new poll finds -- though the nation has a way to go before we're all
consulting Dr. Smartphone.
In a Harris Interactive/HealthDay survey released
Tuesday, more than one-third of respondents who are online said they were
"very" or "extremely" interested in using smartphones or
tablets to ask their doctors questions, make appointments or get medical test
results.
Similar numbers of respondents were eager to use mobile phones and
tablets for actual health-care services -- such as monitoring blood pressure or blood sugar, or even
getting a diagnosis. Such phone and tablet apps are, however, either just
getting off the ground or not yet on the market.
The survey results show that the demand for digital assists to
health care is "strong and likely to grow," said Humphrey Taylor,
chairman of The Harris Poll.
But he added that big questions remain: What types of services
will consumers be able to get with their mobile devices, and when?
"The devil will surely be in the details," Taylor said,
"and these are very big details."
An expert in health-care information agreed. "Right now,
we're looking at a patchwork system," said Titus Schleyer, who heads the
Center for Biomedical Informatics at the Regenstrief Institute, based at
Indiana University-Purdue University in Indianapolis.
Companies are developing a number of apps that, along with
equipment attached to your phone or tablet, can help diagnose everything from ear infections and eyediseases
to irregular heartbeats and malaria.
One goal is to bring better health care to remote parts of the world.
But there are already apps out there designed for the masses --
including ones to manage your blood pressure or blood sugar readings, for
example. You take the reading via a monitor that plugs into your smartphone,
and the app records all the information, which can then be e-mailed to your
doctor or sent to your electronic health record, Schleyer said.
Of course, your doctor has to have the systems in place to do something
with that information. And, Schleyer added, depending on where you live, and
what health system you're in, that may or may not be the reality.
Schleyer said he has first-hand experience with the obstacles. His
wife found an app that let her record and organize her blood pressure readings,
only to discover that her smartphone "couldn't talk" to their
health-care system's portal.
She ended up just bringing her smartphone to her doctor's visit.
"This poll shows us that the public is interested in using
these apps," Schleyer said. "But the health-care system has to make
it easier for them to do it."
Taylor said that in some other
countries, services like these are more widely used because they are required
or doctors are compensated to employ them. "But in this country," he
said, "most doctors and hospitals have little or no incentives to provide
them. They are unlikely to offer them until it is in their interest to do
so."
Another
poll finding was that, not surprisingly, younger adults are more eager to use
their smartphones and tablets than older adults. Only one-quarter of people
aged 65 and older were very interested in using the devices to help manage
their blood pressure, for instance -- compared to 38 percent of younger people.
On one hand, Schleyer noted, older adults could stand to benefit
the most from such technology, because they're more likely to have chronic
health conditions and need more contact with their doctors.
On the other hand, they may simply not be as comfortable with
smartphones and tablets as younger generations are, he said.
Despite the interest in tapping into smartphones and tablets for
health care, some poll respondents had some misgivings. They were less inclined
to want e-mail or text "reminders" to exercise, quit smoking,
or take medication,
for example.
Schleyer said that may be because it's a bit like having your mom
nag you electronically. Plus, many Americans are already inundated with e-mails
and texts. "People may feel there's already too much digital information
flying at them," he said.
Poll respondents were also worried about the security of their
electronically transmitted medical information: 47 percent were "somewhat
confident" it would be secure, while roughly 40 percent were "not
very" or "not at all" confident.
That's a valid worry, Schleyer said. However, he also doubts that
a hacker would have much interest in the blood pressure readings you're sending
to your doctor. "They're probably more interested in your credit card
number."
Schleyer thinks there's a lot of promise for technology to improve
health care for Americans -- if, for instance, consumers can get not only test
results sent to their phones, but also user-friendly information on what those
results mean.
"But right now, none of this is mature yet," he said.
The poll results are based on an online survey of 2,050 Americans
aged 18 and older, conducted between May 22-24.
Monday, June 17, 2013
Running over obstacles to raise Awareness for Porphyria
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Friday, June 14, 2013
New Panhematin® brochure available for your physicians.
New Panhematin® brochure available for your physicians.
Panhematin®
The APF has produced a new Panhematin® brochure. If you would like a copy of the new brochure for your physician, please contact the APF and we will forward one to you promptly. Remember, too, that the APF will send your doctor a free comprehensive doctor packet for the acute porphyrias. Call 1.866.APF.3635 or email porphyrus@aol.com . If your physicians have questions about the administration or use of Panhematin, we will then send an instruction form or arrange a consultation with a porphyria expert if needed.
For the many patients who are taking Panhematin®, please note that Recordati Rare Diseases, Inc. has purchased Panhematin® from Lundbeck Pharmaceutical. Recordati Rare Diseases, Inc. has assured us that there should be no interruption in receiving the Panhematin® treatment and that the product is the same as it has always been. In fact, for the next number of months, the telephone numbers and delivery services that were available through Lundbeck Pharmaceutical will remain the same, as well.
FYI For questions from healthcare professionals regarding general use and administration of Panhematin®, please call Recordati Rare Diseases at 1-866-402-8520. Your call will be answered by a member of the Lundbeck staff on behalf of Recordati Rare Diseases until late 2013. Your physician or hospital pharmacy can order Panhematin® through a wholesaler of their choice. Healthcare professionals can call 1-888-514-5204 to receive help with regular and emergency shipments, Monday thru Friday, 9 am to 6 pm EST. After hours and emergency orders, call 1-800-673-6723. In an emergency event, when the hospital/physician/wholesaler does not have Panhematin® in stock, Recordati Rare Disease will ship directly from its Lavernge, TN distribution site via an expedited delivery service to anywhere in the U.S.—usually within 12-14 hours.
During the 2013 International Porphyria Congress Patient Day meeting, Dr. Jean Charles Deybach spoke about the great benefit of early treatment with heme therapy ( Panhematin and Normosang)
<!--[if !supportLists]-->· <!--[endif]-->Rapid clinical improvement.
<!--[if !supportLists]-->· <!--[endif]-->Decreased urinary ALA/PBG 2-3 days
<!--[if !supportLists]-->· <!--[endif]-->Mean abdominal pain duration 2-3 days
<!--[if !supportLists]-->· <!--[endif]-->No further severe neurological complications
<!--[if !supportLists]-->· <!--[endif]-->No major side effects in acute administration
<!--[if !supportLists]-->· <!--[endif]-->Safe use during pregnancy (Badminton & Deybach, 2006; Marsden & Rees, 2010)
Remember Research is the key to your cure!
Kathyrn Nelson & PCT
Kathryn Nelson
Type of Porphyria:
Porphyria Cutanea Tarda (PCT)
My Porphyria Cutanea Tarda (PCT) experience began roughly seven years ago. At the time I was living in Irving, Texas. When lesions appeared on my face, forearms and legs, I thought that perhaps it was related to Psoriasis, an autoimmune disorder I had since I was a child. As a result, I resorted to a fairly common approach to Psoriasis which is exposure to UV rays. I spent an hour or so every afternoon in the sun, but more lesions developed and the existing ones grew in size. Repeated visits to my Dermatologist resulted in a variety of diagnoses including eczema, hives and finally a "picking" disorder which basically meant the doctor believes you are picking at your skin causing sores and infections. His primary reason for this was that the sores appeared only where I could physically reach the area, in other words, there were no lesions on my back or the backs of my legs. I pointed out that as a forty plus year old woman, I didn't think I had suddenly started to pick my skin but he was not deterred.I continued to use antibiotic ointments on the most severe patches and, as a result of other health concerns, discontinued my efforts to get a daily dose of UV rays. Over time, the lesions began to shrink but a new symptom developed. My skin darkened dramatically in areas where there were no blisters and where the blisters had healed, the skin turned white, giving the appearance of vitiligo. I was seeing a Rheumatologist for other autoimmune symptoms and he suggested I visit a dermatologist he knew who specialized in autoimmune skin disorders. He also prescribed Plaquenel to treat lupus-like symptoms tied to an undifferentiated connective tissue disorder.
It was several months later when I met with Dr. Melissa Costner in Dallas. By that time, most of the lesions and blisters were healed, however, the splotchy dark patches and scarred white areas covered most of my arms, face and large portions of my legs. I described my experiences over the previous three years. Dr. Costner listened closely and then said she wanted to do some blood work. Three weeks later, I returned to her office where she explained I had a familial type of PCT. In one minute, all of the heartaches of the previous four years made sense. She listened to me, something the previous doctors failed to do. She believed me when I said I wasn't "picking" my skin and said that rather than affecting areas where I "could reach," PCT was actually affecting areas being exposed to the sun. By reducing the time I was spending in the sun due to my energy issues, I had actually started the PCT healing process.
Today I still have very dark patches on my skin and very white scars but I have few reoccurrences of PCT. I play close attention to the medications I take, particularly since I have other auto-immune disorders which require a heavy regimen of treatment. PCT was not something I had ever heard of and was honestly not my biggest health concern at the time. But finding a doctor who listened gave me a sense of empowerment that I continue rely on today in all aspects of my health and with all my doctors.
Remember.....Research is the key to your cure!
Be Prepared for Your Appointments
Visiting a Doctor is a commonplace experience, but seeing a physician in a Hospital, might produce white coat syndrome, higher anxiety event, therefore, be prepared for your appointment.
Prior to the visit, think about your specific symptoms and write down all relevant information. Concentrate on what you want to know, your concerns etc. and create a questions list. Ask others around you for suggestions if that is helpful.
When possible type your questions and print three copies: one for you, one for the doctor and one for the person who accompanies you. When typing your list, consider leaving room after each question to fill in the answers. The visit can nervousness and forgetfulness so the questions list is a very helpful tool.
If at all possible don't go alone. Provide your companion with the list and ask him/her to take notes and listen. Four ears are always better than two in processing important information. Discussions with a doctor about possible Porphyria are tough to handle, so support is always helpful.
Being informed is essential to your care and treatment so do your homework before your visit. This is good advice prior to any type of medical meeting to maximize your knowledge from the experience particularly when it involves a serious illness.
A super website is www.ahrq.gov/apps/qb which deals with questions before, during and after the visit thus enabling you to create a comprehensive question list by following this user-friendly program. Modify the questions as they apply to your situation. This is a most valuable resource prior to your appointment.
Be prepared in order to be better informed. This will help to ensure that you get the best possible care.
Also please take time to visit, www.porphyriafoundation.com, for all your testing & treatment options.
Remember.....Research is the key to your cure!
Prior to the visit, think about your specific symptoms and write down all relevant information. Concentrate on what you want to know, your concerns etc. and create a questions list. Ask others around you for suggestions if that is helpful.
When possible type your questions and print three copies: one for you, one for the doctor and one for the person who accompanies you. When typing your list, consider leaving room after each question to fill in the answers. The visit can nervousness and forgetfulness so the questions list is a very helpful tool.
If at all possible don't go alone. Provide your companion with the list and ask him/her to take notes and listen. Four ears are always better than two in processing important information. Discussions with a doctor about possible Porphyria are tough to handle, so support is always helpful.
Being informed is essential to your care and treatment so do your homework before your visit. This is good advice prior to any type of medical meeting to maximize your knowledge from the experience particularly when it involves a serious illness.
A super website is www.ahrq.gov/apps/qb which deals with questions before, during and after the visit thus enabling you to create a comprehensive question list by following this user-friendly program. Modify the questions as they apply to your situation. This is a most valuable resource prior to your appointment.
Be prepared in order to be better informed. This will help to ensure that you get the best possible care.
Also please take time to visit, www.porphyriafoundation.com, for all your testing & treatment options.
Remember.....Research is the key to your cure!
Wednesday, June 12, 2013
Thinking of joining the Clinical Studies? Read more...
Clinical Studies
There are two main types of clinical studies: clinical trials and observational studies. In a clinical trial, there is some form of treatment intervention. There is no intervention in an observational study, which is aimed at observing patients to better understand the long-term course of their disease.
Clinical trials are used to test new treatments before they are approved for use by the FDA. This type of trial gives patients a chance to try out a new medication in its early stages. As with any experiment, the result of a trial is not known before its conclusion. Your participation could help demonstrate a terrific treatment breakthrough, or it could help scientists discover that a new treatment does not work after all. There may be some risk involved from the treatment in a clinical trial.
Participating in either a clinical trial or an observational study is a serious responsibility. Volunteering to participate could be a way to help yourself, affected family members and other patients by advancing medical and scientific knowledge of your condition. Some patients derive great satisfaction from assisting doctors in the study of their disease. Participation in a study can also mean a chance to meet a porphyria researcher in a clinical setting, and the consultation can be beneficial.
For information on porphyria trials currently recruiting patients, call the APF office or visitNIH’s clinical trials website: “Clinical Trials of Medical Treatments: Why Volunteer?” might also be useful reading as you think about whether you’d like to participate or not.
Clinical trials are used to test new treatments before they are approved for use by the FDA. This type of trial gives patients a chance to try out a new medication in its early stages. As with any experiment, the result of a trial is not known before its conclusion. Your participation could help demonstrate a terrific treatment breakthrough, or it could help scientists discover that a new treatment does not work after all. There may be some risk involved from the treatment in a clinical trial.
Participating in either a clinical trial or an observational study is a serious responsibility. Volunteering to participate could be a way to help yourself, affected family members and other patients by advancing medical and scientific knowledge of your condition. Some patients derive great satisfaction from assisting doctors in the study of their disease. Participation in a study can also mean a chance to meet a porphyria researcher in a clinical setting, and the consultation can be beneficial.
For information on porphyria trials currently recruiting patients, call the APF office or visitNIH’s clinical trials website: “Clinical Trials of Medical Treatments: Why Volunteer?” might also be useful reading as you think about whether you’d like to participate or not.
www.porphyriafoundation.com
Remember.....Research is the key to your cure!
Go Green- Easing Brain Fatigue with a Walk in the Park
Easing
Brain Fatigue with a Walk in the Park
Scientists
have known for some time that the human brain’s ability to stay calm and
focused is limited and can be overwhelmed by the constant noise and hectic,
jangling demands of city living, sometimes resulting in a condition informally
known as brain fatigue.
With
brain fatigue, you are easily distracted, forgetful and mentally flighty — or,
in other words, me.
But an
innovative new study from Scotland suggests that you can ease brain fatigue
simply by strolling through a leafy park.
The
idea that visiting green spaces like parks or tree-filled plazas lessens stress
and improves concentration is not new. Researchers have long theorized that
green spaces are calming, requiring less of our so-called directed mental
attention than busy, urban streets do. Instead, natural settings invoke “soft
fascination,” a beguiling term for quiet contemplation, during which directed
attention is barely called upon and the brain can reset those overstretched
resources and reduce mental fatigue.
But
this theory, while agreeable, has been difficult to put to the test. Previous
studies have found that people who live near trees and parks have
lower levels of cortisol, a stress hormone, in their saliva than those who live
primarily amid concrete, and that children with attention deficits tend to concentrate and perform better on
cognitive tests after walking through parks or arboretums. More directly,
scientists have brought volunteers into a lab, attached electrodes to their
heads and shown them photographs of natural or urban scenes, and found that the
brain wave readouts show that the volunteers are more calm and meditative when
they view the natural scenes.
But it
had not been possible to study the brains of people while they were actually
outside, moving through the city and the parks. Or it wasn’t, until the recent
development of a lightweight, portable version of the electroencephalogram, a
technology that studies brain wave patterns.
For the
new study, published this month in The British Journal of Sports
Medicine, researchers at Heriot-Watt University in Edinburgh and the
University of Edinburgh attached these new, portable EEGs to the scalps of 12
healthy young adults. The electrodes, hidden unobtrusively beneath an ordinary
looking fabric cap, sent brain wave readings wirelessly to a laptop carried in
a backpack by each volunteer.
The
researchers, who had been studying the cognitive impacts of green spaces for
some time, then sent each volunteer out on a short walk of about a mile and
half that wound through three different sections of Edinburgh.
The
first half mile or so took walkers through an older, historic shopping
district, with fine, old buildings and plenty of pedestrians on the sidewalk,
but only light vehicle traffic.
The
walkers then moved onto a path that led through a park-like setting for another
half mile.
Finally,
they ended their walk strolling through a busy, commercial district, with heavy
automobile traffic and concrete buildings.
The
walkers had been told to move at their own speed, not to rush or dawdle. Most
finished the walk in about 25 minutes.
Throughout
that time, the portable EEGs on their heads continued to feed information about
brain wave patterns to the laptops they carried.
Afterward,
the researchers compared the read-outs, looking for wave patterns that they
felt were related to measures of frustration, directed attention (which they
called “engagement”), mental arousal and meditativeness or calm.
What
they found confirmed the idea that green spaces lessen brain fatigue.
When
the volunteers made their way through the urbanized, busy areas, particularly
the heavily trafficked commercial district at the end of their walk, their
brain wave patterns consistently showed that they were more aroused and
frustrated than when they walked through the parkland, where brain-wave
readings became more meditative.
While
traveling through the park, the walkers were mentally quieter.
Which
is not to say that they weren’t paying attention, said Jenny Roe, a lecturer at
Heriot-Watt’s School of the Built Environment, who oversaw the study. “Natural
environments still engage” the brain, she said, but the attention demanded “is
effortless. It’s called involuntary attention in psychology. It holds our
attention while at the same time allowing scope for reflection,” and providing
a palliative to the nonstop attentional demands of typical, city streets.
Of
course, her study was small, more of a pilot study of the nifty new, portable
EEG technology than a definitive examination of the cognitive effects of seeing
green.
But
even so, she said, the findings were consistent and strong and, from the
viewpoint of those of us over-engaged in attention-hogging urban lives,
valuable. The study suggests that, right about now, you should consider “taking
a break from work,” Dr. Roe said, and “going for a walk in a green space or
just sitting, or even viewing green spaces from your office window.” This is
not unproductive lollygagging, Dr. Roe helpfully assured us. “It is likely to
have a restorative effect and help with attention fatigue and stress recovery.”
Remember take the time: Few Wash Hands Properly, Study Finds
Few Wash Hands Properly, Study Finds
Did you wash your hands properly after you used the toilet? Probably not, a new study suggests.
Researchers discreetly watched 3,749 people, 60 percent of them women, after they used public toilets in a Michigan college town. Over all, 10.3 percent did not wash their hands at all, and 22.8 percent used no soap. The remainder did use soap, but only 5.3 percent washed for longer than 15 seconds, soap or no soap. According to the Centers for Disease Control and Prevention, proper washing means rubbing vigorously with soap and water for at least 20 seconds.
Men did worse than women — almost 15 percent of them did not wash at all, compared with 7.1 percent of women. People were more likely to wash their hands properly if there were motion-detection faucets, a clean sink or a sign encouraging the practice.
The authors acknowledge that the presence of even discreet observers could have affected behavior, probably encouraging more hand washing. The study appeared in The Journal of Environmental Health.
“Forty-eight million people a year get sick from contaminated food,” said the lead author, Carl P. Borchgrevink, an associate professor at Michigan State University, “and the C.D.C. says 50 percent would not have gotten sick if people had washed their hands properly. Do as your mom said: Wash your hands.”
Remember.....Research is the key to your cure!
Sunday, June 9, 2013
Young Children with EPP ask about Camp Discovery

For young people with chronic skin conditions, Camp Discovery offers a summer camping experience unlike any they’ve had before. Every year, the American Academy of Dermatology sponsors a week of fishing, boating, swimming, water skiing, arts and crafts, and just plain fun.

Under the expert care of dermatologists and nurses, Camp Discovery offers campers the opportunity to spend a week among other young people who have similar skin conditions.
Many of the counselors have skin conditions as well, and can provide support and advice to campers. Fun, friendship, and independence are on the top of everyone’s agenda and everyone shares in the discovery of what it’s like to be included.

Click here for 2013 Volunteer Application
2013 Camp Schedule
Camp Little Pine
Crosslake, Minnesota Ages 10-14 June 23-28* |
Camp Reflection
Carnation, Washington Ages 8-16 June 24-28* | |
Camp Big Trout
Crosslake, Minnesota Ages 14-16 July 7-12* |
Camp Dermadillo
Burton, Texas Ages 9-15 August 11-16* | |
Camp Horizon
Millville, Pennsylvania Ages 8-13 August 10-17 |
Camp Liberty
Hebron, Connecticut Ages 8-16 August 11-17* |
*staff would arrive one day early for orientation.
Remember.....Research is the key to your cure!
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February 16, 2019 Coming to a city near you!! Patient Education and Support Meetings Throughout 2019 the APF wil...
