Thursday, December 28, 2017

Patient Day In Orlando Florida ~ Its Free!

Patient Day In Orlando Florida ~
Its Free!
Complimentary Parking & A Full Day of learning about the Porphyrias, Meeting Experts & Q&A session
Meet other patients and caregivers!

Saturday January 13, 2018
Patient Day
10:00 am Welcome– D. Lyon-Howe, American Porphyria Foundation
10:05 am American Porphyria Foundation Overview
Session 1- Heme Biosynthesis & the Erythropoietic Porphyrias
Co-Chairs: E. Minder, MD & S. Keel, MD
10:15 am Heme Biosynthesis and the Porphyrias 101– J.D. Phillips, PhD
10:45 am Genetics 101– H. Naik, MS, CGC
11:00 am Erythropoietic Porphyrias Overview– M. Balwani, MD, MS
11:30 am EPP Research– J. Marcero
11:45 am Effective & Emerging Therapies for the Treatment of Erythropoietic Porphyrias– E. Minder, MD, MS
12:15 pm Q & A moderated by Co-Chairs
12:45 pm Lunch
Session 2- the Acute Hepatic Porphyrias
Co-Chairs: D.M. Bissell, MD & C. Levy, MD
1:45 pm Diagnosis of the Porphyrias– M. Badminton, MBChB, PhD
2:15 pm Acute Hepatic Porphyrias Overview– D.M. Bissell, MD
2:45 pm Caregivers and Support– Sandra Boone
2:45 pm Current & Emerging Treatments– B. Wang, MD
3:30 pm Research Overview and Patient Perspective– TBD and Sharon Dill, Patient Representative
3:45 pm Q & A moderated by Co-Chairs

4:30 pm Closing remarks– American Porphyria Foundation

Hyatt Regency Orlando
9801 International Drive
Orlando, Florida 32819
+1 (407) 284—1234

Wednesday, December 20, 2017

PSA- Urgent Need for Acute Porphyria Patients Research

Dear friends, 

Please consider being a volunteer. The new drug , Givosarin has had great results thus far..Stopping Attacks is the objective. Ppl like, Michael Boone and Lakeisha Johnson have been telling you all about the great experience.

Your travel is all paid! Miami, Winston Salem, Boston, Galveston beach, San Francisco, Salt Lake City. , Birmingham, NYC, Philadelphia, Little you go..Meet an expert!

Please we urge all of you to contact the APF @ 
1-866-APF-3635 ask for Edrin!  

Get involved with Research today!

Monday, December 18, 2017

Part 2- Helping Patients Take Charge of Their Chronic Illnesses

Empowerment through education
It's very difficult for patients to do what they don't understand, so the first step in equipping patients to take on a more active role in their health care is to educate them. Start by communicating to patients that education is perhaps as important to their health as getting their prescriptions filled. They need to know all they can about their disease.
But just as patient-centered care can be more effective, patient-centered education is better education. The old education program, where you bring people in, sit them down and lecture to them, doesn't work any better than bringing them in, sitting them down and telling them to lose 20 pounds. Instead, the patient's needs should drive the education. For example, our center is testing diabetes education courses based entirely on questions from the audience. We do have a checklist of topics we want to cover, but we address those topics in the context of patient questions rather than through an impersonal lecture. Patients aren't interested in their disease from an intellectual perspective, as we are. They want to know about themselves. What does this mean to me? How's this different for me? How's it going to affect my life?
Four of the most important lessons patients with chronic diseases need to understand are the following:
1.     Their illness is serious. There are still patients out there who believe they have the “not-so-serious kind of diabetes.” If they don't believe it is a problem, they will never make changes to improve their health.
2.     Their condition is essentially self-managed. Every decision patients make throughout the day, from what they eat to whether they walk or ride the bus, has an influence on their health. Communicate to patients that they are the most important individuals in managing their illnesses.
3.     They have options. There is rarely one perfect way to treat a condition. In the case of diabetes, for example, patients can be treated through diet and exercise, oral medication, insulin and so on. Patients need to understand the different treatment options available and should be encouraged to look at the personal costs and benefits of each. Only the patient can decide if the benefits are greater than the costs.
4.     They can change their behavior. Rarely do patients leave the doctor's office and immediately enact whatever change was recommended. The reality is that it often has to be spread out into a series of steps. Teach patients that significant behavioral changes can be made by setting goals, taking that first step and figuring out what you learn about yourself along the way.
Empowering patients with information
One way to help patients focus and begin thinking about their health care goals is to talk with them about their individual health measures (e.g., blood pressure, LDL, HbA1c) and what those numbers mean. At our center, for example, we give patients a handout that lists the critical measures for their condition (ideal and actual), explains what those numbers mean and offers strategies for improvement. When faced with this information, patients can see for themselves where they are struggling and what they can do to better their scores.
A sample page from our handout is shown here.
Blood Pressure
Actual: _________________ mm/Hg
Ideal: 130/85 or lower
My goal is: ______________
A blood pressure reading has two numbers. The top number is called systolic blood pressure. This is the amount of pressure against the blood vessel walls when your heart pumps. The bottom number is called diastolic blood pressure. This is the amount of pressure against the blood vessel walls when your heart relaxes, that is, between heart beats.
In general, high blood pressure means that systolic blood pressure, diastolic blood pressure or both may be too high. For people with diabetes, high blood pressure is 130/85 or higher. High blood pressure increases your risk for strokes, heart attacks, kidney damage and eye disease.
To lower your blood pressure you can:
·       Eat less salt,
·       Take blood pressure medicine,
·       Exercise,
·       Stop smoking,
·       Monitor blood pressure,
·       Drink less alcohol,
·       Maintain reasonable weight,
·       Other: _________________________________
Helping patients set goals
In the patient-centered model of care, the driving force behind each patient visit is the patient's agenda or goals related to his or her condition. Ideally, the goal is clearly displayed in the patient's chart, and each person who handles the chart plays a part in supporting the patient in that goal, asking, “How did it go? What have you done this week? How can we help you do better?”
You might be thinking, “My patients don't have goals,” but they do. Even “noncom-pliant” patients have goals. Probably the best definition of noncompliance is a doctor and patient working toward different goals.
The process of setting “self-management” goals with the patient involves essentially two steps.
1.     Start at the problem. Rather than beginning the patient encounter focused on lab values or weight or blood pressure readings, begin by saying, “Tell me what concerns you most. Tell me what is hardest for you. Tell me what you're most distressed about and what you'd most like to change.” You'll get to the lab values and other issues later, but it will be in the context of the patient's personal goal, which will make it more meaningful for the patient.
As you begin to get a sense of the patient's concerns, explore those issues together. Ask, “Is there an underlying problem? Do you really want this problem to be solved? What's the realissue?”
2.     Develop a collaborative goal. Once you have worked with the patient to identify the real problem, your instinct may be to try to solve it, but don't. Don't try to fix it. Don't just say, “It will be OK.” Instead, validate the patient's feelings and his or her capacity to deal with the problem, and continue asking questions that will lead the patient to his or her own solution. Ask, “What do you think would work? What have you tried in the past? What would you like to try?”
It's always more meaningful when patients find the “ah ha!” on their own, so give them that chance. Encourage them to come up with ideas first, then offer your own suggestions or additional information that they may need. You can say “this works for some people” or “have you tried this?” or “here's why I don't think that's a good idea.” The important thing is to give the patient the opportunity to say “no” and to make the final decision on what goal to try.
Ultimately, at the end of the conversation, the patient should be able to tell you one step he or she is going to take. It should be very specific. If the patient says, “I'm going to exercise more,” ask what that means. Will they exercise four times a week? What activity will they be doing? How far will they walk? Help them to come up with a specific plan that they have created for themselves. It may not be the ultimate goal you would have chosen for the patient, but it's one they are more likely to accomplish. At the next visit, then, you can build on that.
Who actually works with patients to set their goals, whether you or the nurse or the diabetes educator, is perhaps less important than the fact that patients are encouraged to be more involved. The emphasis on self-management goals suggests that the visit is for them. It is their agenda, and they are active participants in the outcome.
Series overview
This article is part of an FPM series that followed Family Care Network, a northwest Washington state group without walls, as it tackled a 13-month quality improvement project focused on chronic disease care. The project was headed by the Institute for Healthcare Improvement and involved approximately 30 organizations nationwide.
Articles in the series are:
Building a Patient Registry From the Ground Up,” November/December 1999, page 43.
Using Flow Sheets to Improve Diabetes Care,” June 2000, page 60.
Making Diabetes Checkups More Fruitful,” September 2000, page 51.
Unnatural instincts?
The patient-centered model of care, and the emphasis on empowering patients to find their own solutions, may go against your instincts as a physician. As health care professionals, we often feel most helpful when we've given advice. The truth is, however, that we don't really help people solve their problems or make lasting changes in their lives by telling them what they should do. Ultimately, patients need to find their own solutions and motivation and must take responsibility for their health. We must empower them to do just that.
Martha Funnell, a certified diabetes educator, is the director for administration at the Michigan Diabetes Research and Training Center, University of Michigan Health System at Ann Arbor. The MDRTC has been funded by the National Institutes of Health since 1977 and is one of six such centers in the United States.
1. Wagner EH, Austin BT, Von Koroff M. Improving outcomes in chronic illness. Managed Care Quarterly.1996;4(2):12–25.

Light The Moment 2018

APF_FBCover_03 email header

Shadow Jumpers 
A new program supported by the American Porphyria Foundation
for children living with Erythropoietic Protoporphyria (EPP)

 APF Stand Alone Logo Email

We invite you to visit
Inside you will find tips and tricks on living with EPP, learn from fellow EPPers, read EPP Kid's stories, see new apparel and a very special opportunity with LIGHT THE MOMENT 2018!
We even have a mascot!
Shadow Jumpers Mascot
We welcome all new tips, stories and ideas. Please send to:

For comprehensive information on Erythropoietic Protoporhyria (EPP), please visit the
 American Porphyria Foundation website:

Friday, December 15, 2017

Part 1- Helping Patients Take Charge of Their Chronic Illnesses

Helping Patients Take Charge of Their Chronic Illnesses
The best thing you can do for your patients with chronic diseases is to let them run with the ball.
Martha M. Funnell, MS, RN
Fam Pract Manag. 2000 Mar;7(3):47-51.
Noncompliance has always been a significant challenge in chronic disease care, and it's one of the issues Family Care Network has had to confront as part of its diabetes quality improvement project, which FPM is following (see “Series overview”). This article is derived from a presentation the author made to the physicians and staff members of Family Care Network as part of that project. As you'll see, the author's solution to noncompliance is simply to render it obsolete.
It's been said that, as health care professionals, we take credit for our patients' successes and blame them for our failures. How often have you heard a colleague say something like, “I got Mrs. Smith's HbA1c down to 7 percent, but Mr. Jones was noncompliant.” The truth is that, in both cases, the responsibility is shared, but ultimately the patient has more control of the outcome than we do.
Think about two of your patients who have, say, type-2 diabetes. Focus on one patient whose condition is well managed and another whose condition is not well managed. What would you say are the differences between those two? Why is one more successful at controlling the disease than the other? Very often, if you examine it closely, the key difference is the patient's level of involvement and responsibility for his or her own condition.
·       The old models of care, where physicians tell patients what to do and try to motivate them to change, do not work.
·       Because patients' day-to-day decisions have a tremendous impact on their health, they must be active, informed participants in the health care process.
·       Physicians can help patients take charge of their conditions by encouraging them to set self-management goals.
The old models
Our health care systems are not always designed with the patient in mind and do little to empower patients to take charge of their conditions. Instead, they are based on an old acute-care model, where the patient presents to his or her physician and the physician tells the patient what to do to get better. It is a “do as I say” model of care, and the patient's role is fairly passive.
That model works fine for a good deal of acute care and in some other circumstances, but it doesn't work well for chronic illness. Having recognized this, many health care systems have tried a different model in which the focus is compliance, or adherence. This model does a better job of recognizing that the patient needs to do something, but it doesn't give the patient any more power. The health care professional is still very much the authority trying to get the patient to do what is needed; the patient's job is simply to be obedient. What we've found, however, is that you can't get patients to do anything. The motivation to change one's behavior — even to take one's medication — is largely internal. The patient is responsible and must take an active role in his or her own care.
Of course the idea of an active patient can be taken to the extreme. Some patients, in response to the old models of care that haven't been working for them, have become not just active patients but activists. They come to their visits with (mis)information from the Internet and other sources; and, although they are involved in their care, they are involved in an adversarial way. This doesn't create better outcomes, and it can result in an unproductive doctor-patient relationship.
The failure of the traditional models has led the health care community to ask, what kind of approach can we use to deal with chronic illness, recognizing that our influence over patients' behavior is limited and fairly temporary? In other words, how can we change chronic illness care so that it better fits with chronic illness?
The patient is the solution
We have learned over the years at our center that effective chronic illness care requires two things. First, it requires a team with the patient at the center. Second, it requires active, involved participants — especially an active, involved patient. This model of care can be described using various terms — empowerment, informed choice, patient centered — but they all have the same underlying concept: The patient is at the center and is actively involved in his or her own health care.
The old model vs. the new
“I hate this exercise plan.”
“Then try walking after dinner every night with your husband for 10 minutes.”
“What do you hate about it? What would help you do better at it?
“I don't think I can quit smoking.”
“Smoking is the leading cause of preventable death...”
“Why do you think that? What has happened in the past when you tried to quit? What concerns you most when you think about trying to quit?
“I haven't been able to test my blood sugar four times a day.”
“It's hard at first, but just keep trying. You really need to keep track of it.”
“What is preventing you from doing that? Do you know what the numbers mean?”
But why can't we stick with the old models? Why does the patient need to be so involved? There are several reasons.
First, most chronic illness care does not even involve physicians and other health care professionals. Instead, it's estimated that between 95 percent and 99 percent of chronic illness care is given by the person who has the illness. On a day-to-day basis, the patient is in charge of his or her own health, and the daily decisions people make have a huge impact on patient outcomes and quality of life.
Second, as a family physician, you may know what's best for treating diabetes or asthma or congestive heart failure, but that does not mean you necessarily know what's best for an individual patient. Even in close doctor-patient relationships, you can't always know the details of your patient's lives: what's most important to them, what their other priorities are, what motivates them, what their financial situation is, and so on. Each patient is the expert in his or her own life.
Finally, we know from several studies that when patients are encouraged to be more involved and when their physicians are less prescriptive, patients do have better outcomes. We also know that this approach does not take any more time but, in fact, can be more efficient because the health care team is addressing the patient's agenda first — and the patient's agenda is, after all, the real reason for the visit.1

In addition to being a more effective approach, it can also be a relief. As a physician, you may feel less frustrated because it is no longer your responsibility to make change happen. It is a joint process. When you create that partnership and get out of the role of simply telling patients what to do, you pave the way for the patient to make significant, lasting change.

Thursday, December 14, 2017

Save 10% off your total NEW APF Merchandise

APF_FBCover_03 email header
We are excited to share with you the new APF Winter Items for sale.

Our hope is that you all will purchase and wear APF merchandise to help raise awareness about Porphyria.

Please note that all orders will go through APF employee Amy

This Week only save 10% off your total purchase!

Please follow the details below to complete your order. No items printed on the back of items due to hood covering.

****We DO NOT accept orders through Facebook****

Please submit your order and payment to or call 1-616-213-0030 directly and leave a detailed message.

Please send an email and include the following: Full Name, complete mailing address, phone number.

For privacy purposes, please send in the email either the Visa/MC Number, Expiry Date, & CVV code on the back of your card.
If you prefer I can contact you by phone. NO CC info is EVER kept on file!

Order: Please send your items that you would like to order by quantity & size for each T-shirt.

**International orders may be priced higher allow 48 hours**

All orders include shipping prices for USPS only. 

 APF Stand Alone Logo Email

Long Sleeve Shirts~ are 6 ounces each 100% Cotton.
Colors are Medium Gray/Grey or Purple
Sizes available Adults Only- S, M, LG, X-LG, 2XL, 3XL- (X-LG. 2XL, 3XL are 3.00 each more)

Price Each- S, M, L 20.00$ Each ** X-LG. 2XL, 3XL are 3.00 each more**

 APF T-Shirt
Long Sleeve 100% Cotton Thick Zip Up Hoodie Colors are Medium Grey/Gray or Royal Purple.

Sizes available Adults Only- S, M , LG, X-LG, 2XL, 3XL- (X-LG. 2XL, 3XL are 5.00 each more)
Price Each- S, M, L 45.00$ Each ** X-LG. 2XL, 3XL are 3.00 each more**

 APF Zip Hoodies

Long Sleeve 100% Cotton Pull Over Hoodie Colors are Medium Grey/Gray or Royal Purple
Sizes available Adults Only- S, M, LG, X-LG, 2XL, 3XL- (X-LG. 2XL, 3XL are 5.00 each more)
Price Each- S, M, L 40.00$ Each ** X-LG. 2XL, 3XL are 3.00 each more**
APF Hoodies 

Grey/Gray Soft Baseball cloth hats adjustable hat backside- 22.00$ Each (Fits Adults Sizes)
APF Baseball Cap 

Wristbands- 2/6.00 or 3.00$ each Colors are Blue or Purple
Apf Wristbands 

Porphyria Car or Fridge Magnet 8.00$ each
car magnet 
 APF Stand Alone Logo Email

Still doing your Christmas shopping? Many of you purchase numerous items from Amazon, not just books.  Now you can support the APF through the AmazonSmile program!  Amazon will donate 0.5-0.8% of the price of your eligible purchases to the APF, at no cost to you.  Please make the APF your choice of a charitable organization.  Support porphyria research while shopping!
Note, this program to provide donations to the APF will ONLY be available to shoppers who visit Amazon via a special web address, namely, instead of the normal homepage.
It is easy and free!  AmazonSmile is the same Amazon you know - same products, same prices, same service.
Thank you for supporting us!  Please follow the link: 

  APF banner

What is δ-Aminolevulinic Acid Dehydratase Porphyria (ADP)?

What is δ-Aminolevulinic Acid Dehydratase Porphyria (ADP)? ADP is more severe than the other acute porphyrias and can present in childhoo...