Skip to main content

Posts

Showing posts from April, 2014

A special thought

Please take some special time to think of all those

 that are going through such difficult times.

 This world we live in is truly troubled with problems...

Sickness~ physically, mentally and emotionally.

 It can stress us out and make us ill. 

We may have family, friends who help and listen to us but they really never will ever know how we really feel inside we hide and cover it up.

 So please take time to learn about your porphyria friends listen, learn, volunteer just being there means the world to all of us.

www.porphyriafoundation.com
"Remember....Research is the key to your cure!"

Longitudinal Study of the Porphyrias

Longitudinal Study of the PorphyriasWe continue to share ongoing porphyria studies, please consider being a part of them.The 7201 Longitudinal Study of the Porphyrias is a longitudinal multidisciplinary investigation of the human porphyrias including the natural history, morbidity, pregnancy outcomes in people with these disorders. We expect to enroll at least 600 incident cases during the 5-year study period.The purpose of this long-term follow-up study is to provide a better understanding of the natural history of porphyrias, as affected by available therapies, and to aid in developing new forms of treatment.The general research questions are:What is the prevalence of specific indicators of disease severity, including neuro visceral and cutaneous manifestations, levels of porphyrin precursors and porphyrins, quality of life, long term effects on the liver, kidneys and other tissues, and case-fatality associated with the various forms of porphyria?What are the relationships between d…

Research Studies Available!

Research Studies Available!Dear APF Members,We hope you will consider being a part of seven ongoing research studies. Now is the time to join the many other people who are helping porphyria researchers in finding new treatments leading to a cure. In the following E-news we will cover each study individually.In most research studies, you will not be asked to take an experimental drug, rather, you will be asked to contribute your blood, DNA and/or urine and answer pertinent questions. Patients, who participate in research, make it possible for researchers to find new treatments, create new studies and work for the improvement of lives that are affected by rare diseases.By joining our registry, you will be contributing to the research of the Rare Diseases Clinical Research Network.Participation in research makes it possible for researchers to:provide the best possible care to patients affected by rare diseasesimprove methods in studying your diseaseachieve deeper understanding of your di…

A Personal story From a Husband and Caregiver about his wife with AIP

A Personal story from a Husband and Caregiver about his wife with AIP......

Kim Willis-BregmenType of Porphyria: Acute Intermittent Porphyria (AIP)My wife and I live in Otaki which is a small rural community one hour north of Wellington on the North Island of New Zealand. I thought you might be interested in the story of how my wife manages Acute Intermittent Porphyria (AIP) in a country that has no specialist centre for Porphyria and consequently no specialists.Kim was admitted to our nearest hospital in 2003 with abdominal pain, back pain, vomiting, and sore arms and legs, and was in a very bad way. Her blood pressure rose dangerously high, and she suffered a mini-stroke and multiple seizures and spent days in intensive care whilst tests were done to investigate the diagnosis of porphyria. Kim's grandfather had died of a condition that fit the symptoms of porphyria but was never diagnosed. Her mother was also very sick with multiple hospitalisations at a similar age (Kim was 36 …

Your HELP Matters!

Your Help Matters!The APF is able to maintain our physician and patient education programs and many other services because of your support and donations. We are working hard to provide patients, family members, as well as doctors with the precise and correct educational information. All the publications, pamphlets and brochures were designed by our Scientific Advisory Board of porphyria experts.We strive for a better and healthy future for us and our children, thus we train 20 future experts through the APF "Protect the Future" training program. Please consider making a donation to this program. Yours and your children's future health depends on each of us supporting the training of doctors who will know how to treat the disease and perform research when our present experts retire.With your help we also fund numerous porphyria research projects (there are 8 ongoing projects now), as well as social media programs. It is easy to think that someone else can keep the APF at …

The APF is YOU!

The American Porphyria Foundation is YOU!  How you may ask?  
Have you given thought to support one of the many Research projects going on?  We have Protect the Future- Doctors Education, Research projects from answering questions to much more.
Have you told your Doctor that there is a Doctor Kit that they can get for Free from The American Porphyria Foundation!  Does he/she need to know about your condition please contact them 1-866-APF-3635 for additional information.
If you have Acute type Porphyria Do you need to purchase an ER comprehensive Kit you should have one and you will have a list of all medical tests, safe/unsafe Drug lists Questions to ask your Dr and so much more it comes in a binder all ready for just 35.00 Dollars what a good value.
Have you considered  making a financial donation to the APF?  What about becoming a member receiving the newsletters, announcements and other valuable information.  Why wait?  These are some of the ways you can help a very rare cause!  But it…

APF T-Shirt Awareness Fundraiser- Do you have your yet! Show yours for a great cause this week!

APF T-Shirt Awareness FundraiserWant to give your loved one a gift & raise awareness for the American Porphyria Foundation?
American Porphyria FoundationT-Shirts for Sale19.00 Each Includes Shipping ~ Sizes are S, M, LG, XL, 2 XL, 3 XL

 You can order a T-shirt by email. Orders can be emailed to porphyriaorders@gmail.com
Please Include: Name, complete address, and phone number.  Also include the Quantity of T-shirts and the size for each one. To accept payment: 1 of 2 options I can accept a VISA/MC only. I must have full name on the card, account#, exp. date, 3 digit code on the back of card CVV-.

 Your information is kept secure, never shared or put on a list. We will accept a money order & personal checks.  You must have name/address/phone # on them. 

For privacy purposes I will be happy to email you the address to send your check or money order to.   Once I receive the order I will ship out your product. 
All products will be shipped out Priority mail with tracking.  Each person …

A life indoors for toddler who is allergic to sunlight

A life indoors for toddler who is allergic to sunlight
I was passed this information on this article for those that may have a type or skin condition.  Please read about this little girl.  Please share and pass it along.  Those that may have EPP, CEP or XLP and would like information please contact the American Porphyria Foundation 866-APF-3635.

"Remember....Research is the key to your cure!"PAINFUL CONDITION: Little Monroe Mills lives with solar urticaria and hopes a hydrotherapy bath will make life more comfortable. MOST parents take for granted the ability of their children to play outside. For young Monroe Mills of Nambucca Heads, New South Wales,  going outside in the sun ends in extreme pain and regular hospital visits. "Monroe suffers from a rare form of eczema that is known as photo-aggravated eczema," her mother Sarah Mills said. "This means any ultra violet exposure leaves her in pain for days. "Monroe has battled this condition since birth. &qu…

Pierre Mouledoux -House Bill HB 1127-Louisiana

On Monday 4/14/14, APF member, Pierre Mouledoux, will go before the Louisiana State House of Representatives Transportation, Highways and Public Works Committee to testify for the legislation regarding tinted windshields for Medical Exemptions. He is requesting if you have photosensitivity, like with EPP, and live in Louisiana, please contact your Representatives or Senators to support House Bill HB 1127.
To view the proposed Bill go here.
Thank you.
"Remember....Research is the key to your cure!"

Your Help Matters!

Your Help Matters!The APF is able to maintain our physician and patient education programs and many other services because of your support and donations. We are working hard to provide patients, family members, as well as doctors with the precise and correct educational information. All the publications, pamphlets and brochures were designed by our Scientific Advisory Board of porphyria experts.We strive for a better and healthy future for us and our children, thus we train 20 future experts through the APF "Protect the Future" training program. Please consider making a donation to this program. Yours and your children's future health depends on each of us supporting the training of doctors who will know how to treat the disease and perform research when our present experts retire.With your help we also fund numerous porphyria research projects (there are 8 ongoing projects now), as well as social media programs. It is easy to think that someone else can keep the APF at …

A Personal Story From Nathan Wayne Carr- Pass it on

Nathan Wayne Carr ~ How Porphyria can get one feeling low Type of Porphyria:  Hereditary Coproporphyria (HCP)How Porphyria can get one feeling lowRecently, I posted on Facebook how I have been dealing with my mental state. I just need to reach out to my Porphyria family. For the past few months, I have not been answering my telephone or keeping medical appointments. Friends have been calling and the power on the cell has been off. I have been feeling overwhelmed, seems as if I only have enough energy to deal with me. My doctor asked me to see psychologist months ago, but I never went to the appointment. I told myself I could handle it. I definitely needed a Prozac adjustment. I am trying hard to climb out of this space, I keep a lot to myself about how I feel, but I can share with you all easily. I need to be true to myself.When I was asked to write this article regarding depression and anxiety, my mind went back over twenty years ago, when I finally received a diagnosis. I was given…

Read this current study!

Online: www.RareDiseasesNetwork.org/porphyrias03/Apr/2014 Study Available!Dear Amy ChapmanThe Porphyria Consortium is pleased to let you know the Carolinas Medical Center & Healthcare System is now enrolling patients for our study: Clinical Diagnosis of Acute Porphyria (7204)About This Study The porphyrias are a group of genetic diseases caused by disturbances in the formation of heme, an essential component of hemoglobin and other proteins, leading to either acute (neurologic) and/or chronic (cutaneous) symptoms. Acute porphyria is often difficult to diagnose because symptoms may not be specific. Unless the patient is in an active attack, laboratory values typically may not be useful for diagnosing porphyria. The purpose of this study is to test whether a focused questionnaire and laboratory evaluation tool can better define risk factors associated with possible genetic porphyria.Can I Join this Study?To read more about this study, see if you are eligible or find a clinical cente…

New APF Video Is Out Now- Check it out

New APF Video Is Out Now
We are glad to announce that the APF has produced a new short video on porphyria. Dr. Lisa Kehrberg, a physician and a patient who suffers from Acute Intermittent Porphyria (AIP), shared her personal experience dealing with the disease.Dr. Kehrbergdiscusses a classic porphyria attack along with pain and other symptoms. Being a patient and a doctor herself, Lisa highlights the importance of appropriate tests. She further covers the importance of glucose and Panhematin as treatment options. You can watch the video by following the link below:   https://www.youtube.com/watch?v=XzLhHlcR_ro&sns=fb


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