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Showing posts from July, 2013
Here is an experience with Children with EPP! This has been brought to you by Rare Connect.
Bringing up 2 Children with EPP Listed below is the brief story of our journey with EPP. Written by Terryb, published 2 months ago.
We have 3 teenage children. the two eldest have EPP and the youngest carries the gene. We first noticed problems with our two eldest on holidays to Spain when even when not in the sun and covered with factor 50, they complained of burning hands. Both my daughter and son suffered scarring and skin flaking away from their hands and feet and in one very alarming incident my daughters face blew up like a balloon and the skin across it split. We naturally started to consult medical professionals very quickly, but it took about 3 years for the full diagnosis to come through. Once we had the diagnosis of EPP the children attended Hope Hospital in Manchester where their care has been excellent. It has meant us making some changes to the way we live our lives to ensure that…

How Does a Heat Wave Affect the Human Body?

Excellent and informative article I had to share.
How Does a Heat Wave Affect the Human Body?Some might like it hot, but extreme heat can overpower the human body. An expert from the CDC explains how heat kills and why fans are worthless in the face of truly high temperaturesBy Katherine Harmon

CAN WE REALLY BEAT THE HEAT?: The human body can face a meltdown if exposed to a prolonged heat wave. Heat exhaustion and heat stroke are just some of the effects of hot weather on the body.Image: Climate change promises to bring with it longer, hotter summers to many places on the planet. This June turned out to be the fourth-hottest month ever recorded—globally—scientists are reporting. With more heat waves on the horizon, and a big one currently sweeping much of the U.S., the risk of heat-related health problems has also been on the rise.

Heat exhaustion is a relatively common reaction to severe heat and can include symptoms such as dizziness, headache and fainting. It can usually be treated w…

APF Announcement

Amy L ChapmanEveryone!!!! **** The T-shirts are almost all gone here is what I have left in sizes:
XL-1XL= 12, L-1, M-12, S-7, so if you would like to place an order leave your order @ porphyriaorders@gmail.com along with method of payment and full mailing address. We accept Visa, MC, Money order and personal check.
http://www.porphyriafoundation.com/news/APF-T-Shirts"Remember....Research is the key to your cure!"

Fruits & Veggies Then & Now

I found this really interesting.  I am a big fan of fruits and veggies.  I encourage you to read this over.

Are Fruits and Vegetables Less Nutritious Today? Studies suggest that today's fruits and vegetables might be missing some key nutrients. Find out why, and discover shopping and cooking techniques that preserve nutritional value. By Wyatt Myers Medically reviewed by Lindsey Marcellin, MD, MPH A number of studies have explored the phenomenon of declining nutrients in fruits and vegetables, but the one that garnered the most media attention was led by Donald R. Davis, PhD, at theUniversity of Texas in Austin, and was published in HortScience. Among Davis’s findings, one of the most consistent was that a higher yield of crops — in other words, more crops grown in a given space — almost always resulted in lower nutrient levels in the fruits and vegetables. What’s more, the median mineral declines among a variety of fruits and vegetables could be fairly significant, ranging from 5…

Big News Reports from the American Porphyria Foundation

The APF Website has Received a Makeover....

We are pleased to announce the release of the Updated APF website.
Some of the new sections Include:New Rotating Members Photo's and Quotes Gallery on the Home Page.New "Porphyria Awareness and Fundraising Events" section with both Past and Present Events.New informative Videos on the Home Page and You Tube videos on a variety of subjects.New links to special educational sectionsAnd a host of other informative resourcesAn enhanced Image Gallery. Additional Member and Panhematin stories.  Previews of the video, Porphyria Live and much more  
Take a look and we hope you all benefit from the vast resource of Information.  Note the medical information on the APF website was written by Porphyria Experts:    http://porphyriafoundation.com. .  
Watch the website for more exciting new features which will be added over the next month, including easy access to Desiree's book, Porphyria , A Lyon's Share of Trouble and an Art Gallery o…

Summer vacation a personal experience from Natalia Nikova

It's summer time have you taken a vacation yet? Please read the reminders off a new personal experience from Natalia Nikova Type of Porphyria:  Acute Intermittent Porphyria (AIP)
Beware of MountainsMy name is Natalia Nikova.  I was born in Russia in St. Petersburg.  I have AIP.I went through horrible surgeries and sufferings in Russia before I was properly diagnosed.  That happened when I was between 25 and 30 years old.After that I was receiving capsules of Adenil through the Red Cross for about four years and injecting myself two times a day.  My recovery was very slow but at the age of 39 I started to feel better and I was able to immigrate to the USA with my daughter and my mother.I managed to change my profession from Choral conductor to a computer programmer to support my family and my porphyria's symptoms almost disappeared. Now I am 63 years old and in August 2004 all of a sudden I had a reminder. I and my husband went to Peru.  I got immediately sick in Cusco from the…

FDA Warns of Sunscreen Spray's Flammability Risk

FDA Warns of Sunscreen Spray's Flammability Risk
SUNDAY, July 21 (HealthDay News) -- Certain sunscreen sprays worn close to an open flame may pose a risk of catching fire, the U.S. Food and Drug Administration warns.The agency said it knows of five incidents in which people wearing sunscreen spray near sources of flame suffered significant burns that required medical treatment. The products involved in these incidents were recalled and should no longer be on store shelves.However, many other sunscreen spray products contain flammable ingredients, commonly alcohol. The same is true for some other spray products -- including insect repellants and hairsprays -- and even some non-spray sunscreens, the FDA said."Based on this information, we recommend that after you have applied a sunscreen spray labeled as flammable, you consider avoiding being near an open flame, sparks or an ignition source," Dr. Narayan Nair, a lead medical officer at the FDA, said in an agency news relea…

New shipment arrived today! APF-T-shirts & APF videos selling out get yours today.

Back by popular demand!  New shipment in. These will not last long.  They are going quick.  Did you get your video & T-shirts yet?  Support the APF by making your purchase today!

We are pleased to announce that the official APF T-Shirts have arrived!



Our hope for the T-shirts is that you all will buy and wear them to help promote and raise questions about Porphyria and to raise funds for the Dr. Packets, pain Management docs, among many other publications we make available at no cost.Amy Chapman is heading up the T-shirt project. There are also some copies of Porphyria Live for sale. For information on how to order the T-Shirts and/or the Porphyria Live Video see below.
Porphyria Live DVD Introduction

You can order a T-shirt and/or Porphyria Live DVD by sending an email order toporphyriaorders@gmail.comI must have name, complete address, and phone number.  Also include the Quantity of T-shirts and the size for each one. And include the quanity of the Porphyria Live Video.
To accept pa…

APF Website received a makeover! Check it out.

The APF Website has received a makeover!
Take a look at some of our new features like the New Rotating Members Photo's and Quotes Gallery on the Home Page.

There is a new section "Porphyria Awareness and Fundraising Events" A list of Past and Present Events.

Among many other things.
Take a look and we hope you all benefit from the vast resource of Information provided and screened by Porphyria Experts.
Timeline PhotosThe APF Website has received a makeover!
Take a look at some of our new features like the New Rotating Members Photo's and Quotes Gallery on the Home Page.

There is a new section "Porphyria Awareness and Fundraising Events" A list of Past and Present Events.

Videos on the Home Page, Among many other things.

Take a look and we hope you all benefit from the vast resource of Information provided and screened by Porphyria Experts.
By: American Porphyria Foundation
www.porphyriafoundation.com

"Remember....Research is the key to your cure!"

Living with EPP webinar

Living with EPP webinar We'd like to invite you to a webinar: 
"Living with EPP" 
Sunday, August 11th at 20.00 CET (Barcelona time), 14.00 EST (New York) 
http://eurordis.emea.acrobat.com/rare_dise... Enter as a Guest with your Name, no password required. Connect your headset Mission: People living with EPP and their families come together to share their stories, realize their similarities, share their strategies, and have a virtual meeting. There will be plenty of time for discussion. We hope you can join us on August 11! If you're on holidays, don't worry, we'll record it and post the video here afterward."Remember....Research is the key to your cure!"

Offical APF T-Sirts Ordering Information below. Order your TODAY.

We are pleased to announce that the official APF T-Shirts have arrived!

Our hope for the T-shirts is that you all will buy and wear them to help promote and raise questions about Porphyria and to raise funds for the Dr. Packets, pain Management docs, among many other publications we make available at no cost.Amy Chapman is heading up the T-shirt project. There are also some copies of Porphyria Live for sale. For information on how to order the T-Shirts and/or the Porphyria Live Video see below.
Porphyria Live DVD Introduction
You can order a T-shirt and/or Porphyria Live DVD by sending an email order toporphyriaorders@gmail.comI must have name, complete address, and phone number.  Also include the Quantity of T-shirts and the size for each one. And include the quanity of the Porphyria Live Video.
To accept payment: One of two options I can accept Paypal VISA/MC only I must have full name on the card, account#, exp. date, 3 digit code on back of card CVV- I will accept money orders and pe…

Feelings~ This is how I feel sometimes

"Remember....Research is the key to your cure!"

Warren Hudson ~ Caretaker

HomeCaretaker Support Forum
Warren Hudson ~ Caretaker

Type of Porphyria:  Acute Intermittent Porphyria (AIP)Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forumfor spouses or partners who help their loved one cope with porphyria. If you would like to participate in the Caretaker group, please contact the APF for Warren's contact information. Below is Warren’s story.
"Porphyria is a large part of my life effecting relationships and day-to-day activities.  It controls my ability to work, what kind of jobs I can take, and how I care of my family.  Porphyria cost me friendships and takes a great mental and physical toll. I am extremely afraid of the simple act of visiting new doctors. I go prepared with questions and the expectation of disappointment or rejection. The horror related to a hospitalization is something I am unable to put into words. I know my story is common for those suffering with one of the Acute Porphyrias. How…

How to Become a Very Healthy Person-Total Body, Mind, Makeover You deserve it!

What great suggestions! Total Body, Mind, Makeover You deserve it!  Feel Well Everyone


Want to become a healthier person? It's all about making gradual changes. Following the tips in this article offer several benefits for you: lower risk of several cancers and diseases, a possibly leaner frame, and the chance to live a long and happy life.

1Get lots of sleep. In order to maintain a healthy body, you'll need 8-10 hours of sleep every day. This keeps you awake and alert, so you don't have to drink caffeine and sugar-loaded energy drinks. If you are a kid and have early school times, go to sleep earlier on school nights.


2Laugh and smile! Smiling a lot makes your face look younger and it feels great. If you laugh a lot, it has been scientifically proven to keep you healthier.


3Do nothing. Staying in a dark, quiet place without having any stressful thoughts for about ten minutes will leave you feeling refreshed. If you just relax, you will f…