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Showing posts from May, 2014

Amanda Boston ~ Panhematin Story

Amanda Boston ~ Panhematin Story Type of Porphyria:  Variegate Porphyria (VP)I had the most amazing privilege participating in the “7203: A double-blind, randomized, placebo-controlled, parallel group trial on the efficacy and safety of Panhematin® in the treatment of acute attacks of porphyria” research study. I met two amazing Doctors that I had only spoken with through email and telephone: Dr. Karl Anderson and Dr. Akshata Moghe. 
The research was performed in Galveston, TX at the UTMB. I was flown into Houston and transported to Galveston. I stayed at the Harbor Hotel until I developed symptoms of an attack, which occurred two days after I arrived, as my attacks are very frequent. For the research, I was blindfolded, the drapes were drawn and foil wrap was put on the cords, so that I wouldn't know if I were getting a placebo or Panhematin™, but my body knows the difference. I was started on the research, but my headaches and abdominal pain was only getting worse. I was about t…

EPP Kids' Program

EPP Kids' ProgramCamp Discovery Summer Time Parents and Kids!Camp Discovery offers a wonderful summer camping experience for young people with skin disorders like porphyria.Every year, the American Academy of Dermatology sponsors a week of fishing, boating, swimming, water skiing, arts and crafts, and just plain fun.Under the expert care of dermatologists and nurses, Camp Discovery offers the opportunity of spending a week among other young people who have similar skin conditions. Many of the counselors have serious skin conditions as well, and can provide support and advice to campers.Fun, friendship, and independence are on the top of everyone's agenda. And, everyone shares in the discovery of what it's like to be included.There is no fee for camp. Full scholarships, including transportation, are provided by the American Academy of Dermatology through generous donations of their Sponsors and other organizations. Sponsors of the Academy are asked to recommend candidates …

Join APF In Touch

Join APF In TouchBecause porphyria is a rare disease (defined as affecting fewer than 200,000 sufferers in the U.S.), many newly diagnosed patients have never even heard of the condition before, let alone met someone else who suffers from it. We created the APF In Touch network to meet this need.APF membership includes access to the In Touch network, through which members can contact others around the country who are dealing with porphyria. Some members form lasting friendships via email, telephone or old-fashioned letters. Others prefer to reach out to members in their region and organize face-to-face get-togethers.If you are seeking support and fellowship, or are willing to be there for others who are dealing with porphyria, please fill out and send in the In Touch consent form to our address below. For more information on the APF In Touch network, contact the APF office: 866-APF-3635 or 713-266-9617.American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056What the In T…
Sakura Friends (Japan)Our friends from Japan would like to be part of our Global Partners Program. Like us, their group feels that international cooperation is extremely valuable. Their group is also very eager to learn through exchanging information and sharing communication.Patients in Japan have difficulties finding a doctor who knows how to treat the porphyrias, just like we do here in the US. Together, we will be able to enhance awareness of the porphyrias all over the world.Members of the Japanese Sakura Friends, would like to communicate with other people in the US. Please learn about their group below:Welcome to "SAKURA Friends"Japanese porphyria patients group, "SAKURA Friends" (SAKURA means cherry blossoms) was formed in 1997 by porphyria patients, families and support volunteers. Today the group has 66 members (as of July 2007).The group's activities include issuing newsletters three times a year, organizing gatherings and study meetings, providing i…

Clinuvel Updates` Experts in light and skin

Clinuvel’s management address patients’, shareholders’ questions Over an extended period of time Clinuvel Pharmaceuticals Ltd (ASX: CUV; XETRA-DAX: UR9; ADR: CLVLY) has received a number of questions from patients, shareholders and the broader biotechnology community regarding the company’s program and the progress being made towards regulatory approval by the EMA (European Medicines Agency) of the company’s drug SCENESSE® (afamelanotide 16mg). In this release, Clinuvel’s Chairman Stan McLiesh and CEO Dr Philippe Wolgen address those questions most frequently asked of the company.How long will it take to complete the EMA review of SCENESSE®?
The EMA review is estimated to be completed between July and October 2014, yet further reviews by the Agency are possible.Why has the review process taken so long?
The dossier we have filed is complex. Firstly, no other melanocortin has ever been submitted to European regulatory bodies. Secondly, erythropoietic protoporphyria (EPP) is a complex dis…

Cover up this summer!

Happy Summer to ALL those With Porphyria ! Don't forget to cover up!

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

Study Available! Research # 7204 Be apart of research

Online: www.RareDiseasesNetwork.org/porphyrias03/Apr/2014 Study Available!
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:www.rdcrn.org/porphyrias/studies/7204.htmIf you are already participating in this study, please disregard this email.Do We …

A little diddy from Victor Mejias about EPP

Victor A Mejias

I push myself to go to work all week....
I push myself to do work around the house....
I push myself to be with family and friends....
I push myself to do the things I love to do....I'm on Fire, can't sleep and depressed.EPP problems!‪#‎coolsideofthepillow‬
What you guys go through stay cool and stay strong EPPers....

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

Have you Joined the Registry yet?

Have you Joined the Registry yet?
Join the Porphyria Registry and LET THE GOVERNMENT KNOW THEY MUST PROVIDE FUNDING FOR PORPHYRIA RESEARCH!!!!!To join the Contact Registry, click here to open a page that lists all of the rare disease consortia. Scroll down the page until you come to the Porphyria Consortium and click on your type of porphyria. You will then be asked to complete a simple form including information about the date of your diagnosis, if you know it. If you have copies of your initial diagnostic lab results, you may want to have them handy when you go to the registry website. Porphyria experts have created this National Porphyria Registry—a type of partnership between doctors and patients— as a way for those with porphyria to share information about their health and treatment so physicians can learn from their experience and use that knowledge to enhance diagnosis, treatment and eventually find a cure for porphyria.It is the best means to prove that there are enough porphy…

APF and YOU! Please help!

For 30 years, the APF has been the only US foundation with a board of experts who assist porphyria patients. YOUR support has made possible great advances in research, physician and patient education and patient support. The APF is YOUR foundation and exists to serve YOU and YOUR families. Now the APF needs your help to continue all these valuable programs and services. We need YOUR donations to help us continue the PTF program and expand our physician and patient education programs, as well as our research efforts. Every one of YOUR donations are tax deductible. The APF is non-profit. One dollar is as important as one thousand, because it comes from YOU! Thank You.http://www.porphyriafoundation.com/content/support-american-porphyria-foundation


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

Read about Carol Coons and PCT

Read about:

Carol Coons
Type of Porphyria:  Porphyria Cutanea Tarda (PCT) I have PCT but was misdiagnosed many times since I first noted that I was blistering in 2004. Three dermatologists in a row were unable to find out what was wrong with me even after I had a biopsy. My ferritin level was accidentally discovered at an unrelated clinic visit, and it was over 900.
At that time, I was told to go to a hematologist, who said that that my only problem was hemochromatosis, even after I showed him my blisters and sores. I did have a genetic H63D heterozygous defect. I had a port put in place and to date, I have had over 45 phlebotomies. My internist sent me to get a second opinion, where I was told that I had PCT. As the treatment was the same, I had not gotten a port or had the other phlebotomies in vain.
I have no idea how I developed PCT, but now I try to stay out of the sun, but it did show up while I was taking Paxil for my fibromyalgia pain and spending a week at the be…

Healthwell Foundation

Dear members, the HealthWell Foundation provides financial assistance to eligible individuals to cover coinsurance, copayments, health care premiums and deductibles for certain medications and therapies for acute porphyria treatment (like Panhematin®). To determine eligibility and apply online, visit: http://www.healthwellfoundation.org/eligibilityEligibility | HealthWell Foundation The HealthWell Foundation stands ready to serve you! If you are a person with a diagnosis and are seeking assistance, please continue on this page. If you are applying on another person's behalf, please see Apply for Patient.




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

A wonderful overall text book medical journal READ SAVE AND PRINT!

I would like to say that this article is a really nice overall document to print save, and share with your Doctors.  Its reliable and it is a medical journal you will see below many familiar names of Experts Doctors and/or Protect the Future Doctors.  That is why it is critical to be informed for your health.  Enjoy!


Nutrients. Mar 2014; 6(3): 1080–1102.Published online Mar 13, 2014. doi:  10.3390/nu6031080PMCID: PMC3967179 Heme, an Essential Nutrient from Dietary Proteins, Critically Impacts Diverse Physiological and Pathological ProcessesJagmohan HoodaAjit Shah, and Li Zhang*Author information ►Article notes ►Copyright and License information ► Abstract Heme constitutes 95% of functional iron in the human body, as well as two-thirds of the average person’s iron intake in developed countries. Hence, a wide range of epidemiological studies have focused on examining the association of dietary heme intake, mainly from red meat, with the risks of common diseases. High heme intake …