Sunday, April 13, 2014

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!"

Wednesday, April 9, 2014

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 work, but it takes all of us. With your help, support and tax deductible donations we make it all possible. Thank you for your contribution. If you have any suggestions, questions, or you would like to make a donation, please contact the APF: 866-APF-3635.

APF Members Promoting Porphyria Awareness
  •  The Cook brothers, Cason and Caul, will continue a HAT DAY tradition for Porphyria Awareness Week 2014. Both brothers have EPP and have set a great example about enhancing awareness of the disease in their home town of Vernon, TX. The boys will raise funds for the APF by hosting HAT DAY where everyone at their schools who wanted to participate could wear a hat in honor of the brothers and bring one dollar for the APF.

  • Amanda Rich is making purple bracelets for survivors. The bracelets are handmade and can be personally designed.

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

Monday, April 7, 2014

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 low
Recently, 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 information to contact the American Porphyria Foundation, and I was happily waiting to receive the information packet. When it arrived, I was set and ready to read the Porphyria booklet from cover to cover. I started reading, but every time I got to the symptoms section I kept closing the book. I kept getting stuck on “mental afflictions”, but thought they do not apply to me.
It is morning, and I am awake. I feel as though I arise into a world that is not my own. A world formed from the elements of the earth that my body cannot withstand: the sun, UVA and UVB rays, weeds, trees, mold, grass and a variety of foods. I was once meeting with a doctor and he told me I was in denial of my condition, which was true at the time. I just wanted it to be a bad dream, and I would awake lying on the beach soaking up the sun.
But this is my reality and I too have to except it. I was in a dark place. I felt as though I was in a hole unable to crawl out. I have the support of many wonderful friends and family members that are concerned about me, but, during those times of depression I shut off mostly everyone. I didn’t answer my telephone nor returned calls to those who cared.
I had to find a way to pull myself up out of the self-pity I was wallowing in. I was so tired of the pain, nausea, no appetite, weight loss and the constant medical bills that kept pouring in. One day, with the help of friends, I pulled through. I had to remind myself that this too shall pass. I have been here before and made it. I was focusing on what maybe yet to come and not on what was taking place in the moment; that I am surrounded by a loving family and friends who love me as I am and concerned about my well-being. And that God has always been my rock, provider and protector. I am learning to be content.
I also had to make a decision to take better care of myself by keeping my medical appointments that were regularly scheduled. Yes, I do get tired of going to the doctors. I recently joined the YMCA so that I can strengthen my body and clear my mind. At times, workouts can be painful especially during times of muscle weakness or mild crisis. But with a new determination I arise. I thank God for my parents, sisters, daughters, granddaughters and friends that are understanding and encourage me to take better care of myself regardless of my situation.
I have made an appointment with a psychologist. This time I do plan on building a relationship with this individual to help me cope with these issues and find things to do that I enjoy. I do not know why I feel so selfish when I have to make decisions for myself and my well-being regardless of how others feel. I do think that the medical issues I had last year changed me and my body.
I am satisfied with seeing my new psychologist, being able to speak freely about how I feel and to help me cope with daily living. We know that living with Porphyria is very painful and difficult to carry out everything we have planned. I have just learned to expect the unexpected and that I have to be prepared for any changes in my life. From what I have gone through in the past reminds me that I can cope with the future. I am making it one day at a time.
I had to remove some individuals from my life that just could not understand my illness or caused me stress and it made me feel better. I am spending time concentrating on myself, eating more, walking daily, spending time in the gym and surrounding myself with friends and family that make me laugh and do not try to fix me.
I love myself just the way I am. I was beautifully made by the hands of God. He knew me while I was in my mother’s womb. So he was aware of my situation and is prepared to help me through it.

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

Friday, April 4, 2014

Read this current study!

Online: www.RareDiseasesNetwork.org/porphyrias03/Apr/2014

Study Available!

Dear Amy Chapman
The 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 center near you, please visit our web site:
If you are already participating in this study, please disregard this email.
Do We Have Your Correct Information?
Stay Informed!
We want to keep you informed with the latest news and information. Keeping your contact information up to date can be done quickly and easily on the Web:
Click Here to Update Your Information
About the Porphyrias Consortium
The Porphyrias Consortium is a network of physician scientists, and clinical research resources dedicated to conducting clinical research in the Porphyrias. We Can Help You: Become aware of clinical research and clinical trial opportunities; Connect with expert doctors; Get help in managing your disease. 
Learn More >
The Porphyrias Consortium is a part of the National Institutes of Health's Rare Diseases Clinical Research Network. For more information, visit:www.RareDiseasesNetwork.org
The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate. Participation in research studies is voluntary. Deciding not to participate in a research study does not affect your ability to receive care at any of our Clinical Centers or from other physicians.
Rare Diseases Clinical Research Network
www.RareDiseasesNetwork.org
The Rare Diseases Clinical Research Network (RDCRN) was established by the National Institutes of Health (NIH) to develop research studies for rare diseases, and to encourage cooperative partnerships among researchers at over 150 clinical centers around the world. This increased cooperation may lead to discoveries that will help treat and perhaps prevent these rare diseases, as well as produce medical advances that will benefit the population in general. The Rare Diseases Clinical Research Network is comprised of a Data Management and Coordinating Center and 17 consortia studying over 100 rare diseases.
The Porphyrias Consortium is a part of NIH Rare Diseases Clinical Research Network (RDCRN). Funding and/or programmatic support for this project has been provided by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the NIH Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS).
The National Institutes of Health does not endorse or recommend any commercial products, processes, or services. The views expressed in written materials or publications do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.

For more information please email me your name and phone to see if you qualify for this study Amy.APF@gmail.com


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

Wednesday, April 2, 2014

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. Kehrberg discusses 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!"

Thursday, March 27, 2014

Global Porphyria Alliance What is it? Check it out!

Global Porphyria Alliance

APF members live all over the globe. We hope that they will soon be able to enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria in their own language.
Out of concern for others with porphyria in countries around the world, we hope to place a translation of the For Physician's section of the website in specific languages. The first such translation is already available in Portuguese. This is an enormously important project, and it will require your help.
If you would like to help us extend a hand of friendship and understanding to our friends outside the English-speaking countries, or if you want more information about the Global Porphyria Alliance, please call us at 866-APF-3635 (866-273-3635).
"Remember....Research is the key to your cure!"

Wednesday, March 26, 2014

Notice News From Desiree Lyon

Notice. Along with the Palm Beach patient education meeting on april 5 , there will be other meetings throughout the year. Please watch the APF website for dates and cities .
Here are a few definite cites but approx. dates. More meetings and details to be Announced.


Boston, MA.  Nov 7-11


San Francisco, CA.  Dec. 6-9 


Houston, TX.  July 2,


Santa Rosa Beach, FL. (Between Destin and Panama City).  Oct 11-14. Or early June.
 
Los Angeles , CA.

Atlanta, GA.

Chicago, IL.

If you would like to be a part of these exciting Patient Education meetings please contact the American Porphyria Foundation at 866-apf-3635 or visit porphyriafoundation.com

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