Monday, January 15, 2018

Keep Yourself Moving

Keep Yourself Moving

“If exercise were a pill, it would be the most widely prescribed medication in the world.” (Emory University School of Medicine) Of all the things we can do for our health, few are more generally helpful than physical exercise.
Exert yourself. Leading a physically active life can help us feel happier, think more clearly, have more energy, be more productive and, along with proper diet, control our weight. Exercise need not be painful or extreme to be effective. Regular periods of moderate exercise several times a week can be very beneficial.
Jogging, brisk walking, biking, and taking part in active sports​—enough both to get your heart beating faster and to cause you to break a sweat—​can improve your endurance and help to prevent heart attack and stroke. Combining such aerobic exercise with moderate weight training and calisthenics helps to strengthen your bones, internal muscles, and limbs. These activities also contribute to maintaining a higher metabolism, which automatically helps to control your weight.
Exercise can be enjoyable
Use your feet. Exercise is beneficial for people of all ages, and membership in a gym is not required to get it. Simply using your feet instead of a car, bus, or elevator is a good start. Why wait for a ride when you can walk to your destination, perhaps even arriving there faster? Parents, encourage your children to participate in physical play, outdoors whenever possible. Such activity strengthens their bodies and helps them to develop whole-body coordination in ways that sedentary entertainment, such as video games, cannot.
No matter how old you are when you start, you can benefit from moderate physical exercise. If you are older or have health problems and have not been exercising, it is wise to consult a doctor about how to begin. But do begin! Exercise that is started gradually and not overdone can help even the oldest among us to maintain muscle strength and bone mass. It can also help seniors to avoid falls.
Exercise is what helped Rustam, mentioned in the first article of this series. Seven years ago, he and his wife began jogging a little each morning, five days a week. “At first, we made excuses not to go,” he relates. “But having a partner helped to motivate both of us. Now it has become a good, enjoyable habit.”

Thursday, January 11, 2018

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

Tuesday, January 9, 2018

PSA: ‎Liz Gill‎ to British Porphyria Association

Liz Gill to British Porphyria Association

Did you take part in a trial of Scenesse? We need your help!
NICE recently made a preliminary recommendation not make Scenesse available on the NHS in England. We are responding to their consultation document and need your help to make sure our response is as complete as it can be. Amongst other things, we are trying to demonstrate that the positive experiences of Afamelanotide are representative of most of those who were on the trial. But to do this we need to speak to people who were on any of the Scenesse trials to tell us how it affected them. Please get in contact on or 0300 30 200 30. Or post a few sentences here.
THANK YOU for your continued support.

Monday, January 8, 2018

Wisdom for Heart and Health

Wisdom for Heart and Health
 Wisdom for Heart and Health

“A calm heart is the life of the fleshly organism.”​—PROVERBS 14:30.

“A heart that is joyful does good as a curer.”​—PROVERBS 17:22.

● Those simple but profound statements were spoken by King Solomon of Israel about three thousand years ago. * But are they true? What does modern medicine say?

Concerning a calm heart versus one given to anger, the Journal of the American College of Cardiology states: “Current findings suggest a harmful association between anger and hostility and CHD [coronary heart disease].” Hence, the Journal notes: “Successful prevention and treatment of CHD might involve . . . not only conventional physical and pharmacological therapies, but also psychological management focusing on anger and hostility.” Simply put, a calm heart fosters good health, just as the Bible says.
Similar positive effects spring from a joyful heart. Dr. Derek Cox, a health official in Scotland, stated in a BBC News report: “If you are happy you are likely in the future to have less in the way of physical illness than those who are unhappy.” The same report stated: “Happier people also have greater protection against things like heart disease and stroke.”
What is more, that wisdom is recorded in plain language so that all can benefit. And it comes free of charge!

As millions have already discovered to their great joy, “when wisdom enters into your heart and knowledge itself becomes pleasant to your very soul, thinking ability itself will keep guard over you, discernment itself will safeguard you.” 

Is that not most reassuring?

Saturday, January 6, 2018

Shadow Jumpers Store Merchandise for Sale

Did you know that we have "Shadow Jumpers"
Tshirts, Pullover Hoodies, New Wristbands, and hats
for Youth & Adults- Raise awareness today!

Here is the link and pricing gets yours today before they are gone`

Friday, January 5, 2018

Tiffany England ~ Stuck on you Vinyl~ Raising Awareness for Porphyria

         Hi, My Name is Tiffany England.  I was diagnosed with PCT and then VP at the age of 20.  I've spent the last 16 years going from attack to attack, like most people do.  I've had a couple years here and there where I didn't suffer from major attacks, but not often.  Right now, is one of those good times.
          So, about a year ago I started my own Vinyl Decal business.  I make vinyl stickers that can go on your car, windows, walls, phone cases, signs, notebooks, computers, and more.  It is something that I can do on my own time, when I'm feeling well.  It’s also something I really enjoy doing.  Amy Chapman contacted me about a month ago to see if I would design one for the American Porphyria Foundation.  I was so excited to do this.  My hope is that they will find a cure or at least a better treatment for Porphyria in my lifetime.  So, with saying this a portion of each sale will be donated to the American Porphyria Foundation.

Each listing can be viewed on FB at this link:


The APF is not selling these.

Please message me directly to place your order.  Each item for sale is listed as A, B, C, D, E, F.  They have the price and size listed on the picture.  If you have questions please message me  & I will respond promptly.
 I wanted to specify that each decal is made custom and not going through a generic print/machine. 

Thank you for stopping by my store, raising awareness about Porphyria!  My hope is that you enjoy each one made personally.


Tiffany England- Porphyria Advocate

Thursday, January 4, 2018



You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if they carry a mutation in a gene associated with a predisposition for acute porphyria. This opportunity can shorten the time to diagnosis and prevent misdiagnosis.
How does it work?

*Genetic testing is ordered by your physician.
*Results are then reported to your physician ONLY (No other organization will receive any identifiable information regarding a patient or their results)
Who is eligible?
*Patients must be 16 to 55 years old
*Patients must meet eligibility from at least one of the following criteria:
Elevated Urinary Porphobilinogen (PBG)
Unexplained recurrent (more than one), prolonged (>24 hours) episodes of severe, diffuse abdominal pain AND at least 2 of the following:
Red to brownish urine, OR
Known or suspected family history of an acute hepatic porphyria, OR
Blistering skin lesions on sun-exposed areas, OR
Peripheral nervous system manifestations occurring around the time of abdominal pain (i.e. motor neuropathy (paresis), sensory neuropathy (numbness, tingling, limb pain), OR
Central nervous system manifestations occurring around the time of abdominal pain (i.e. confusion, anxiety, seizures, hallucinations), OR
Autonomic nervous system manifestations occurring around the time of abdominal pain (i.e. hyponatremia, tachycardia, hypertention, nausea and vomiting, constipation)
This program was developed to reduce barriers to genetic testing and counseling and to help people make more informed decisions about their health.
Contact the APF on 1-866-APF-3635 or 713-APF-3635 to guide you through the process.

Keep Yourself Moving

Keep Yourself Moving “If exercise were a pill, it would be the most widely prescribed medication in the world.” (Em...