Friday, November 30, 2018

GET INVOLVED WITH APF

GET INVOLVED WITH APF

Become a member of the American Porphyria Foundation today, and join us in our work for your good health!
When you join the APF, you become an integral part of an organization that empowers patients and helps them on the road to accurate diagnosis, proper care, and some day a cure. Adding your voice to ours makes us all stronger as we address our needs to health care providers, local, state and federal agencies and Congress. If you feel you have porphyria but do not have tests indicating you have one of the diseases, you are welcome to join the APF to keep abreast of new discoveries in diagnostics and treatment.
Members of the American Porphyria Foundation receive:
  • Our quarterly newsletter — news about porphyria research and clinical studies, scientific meetings and member get-togethers, and stories about the doctors working in the porphyria field and about members like you;
  • Attend APF Patient Educational meetings with Experts Nationwide;
  • Receive weekly E-News in your email;
  • Free participation in telephone conference calls with top researchers in the porphyria field;
  • Knowledge—that you are an important part of keeping reliable medical information about porphyria available to those who are newly diagnosed, or at a crossroads in their porphyria treatment, and frightened;
  • And much more!
The American Porphyria Foundation relies on member support to sustain programs like this website and other literature written or approved by porphyria experts.
U.S. memberships are $35 annually; US membership suggested annual donation is $35. Donate and receive a FREE Porphyria Live DVD, as well as a number of pertinent brochures. International memberships are $45. The APF is a U.S. 501(c)(3) non-profit organization. All donations to the APF are tax deductible.
Join the APF today! Call us or join online.
To join by phone with your VISA or MasterCard, call us toll-free at 1-866-APF-3635 Monday-Friday from 9:00 a.m. to 4:00 p.m. Central Time. To join by mail or fax, please click here to complete and print the donation form.
Unable to pay? Membership is free to all.  The fee is only a suggested donation.
American Porphyria Foundation
4915 St. Elmo Avenue, Suite 105 
Bethesda, MD 20814

Work with us!

The American Porphyria Foundation welcomes donations of your time and talents too. Would you like to volunteer or raise money for the APF, organize or attend an event, in addition to informing yourself about the porphyrias? If so, welcome! You’ll find lots more information in this section of our website on opportunities to get involved in our, and you can always call our office for help: 301-347-7166.
The APF is here to serve, and we’re proud to have you with us.

Wednesday, November 28, 2018

THE GLUCOSE EFFECT IN ACUTE PORPHYRIAS

THE GLUCOSE EFFECT IN ACUTE PORPHYRIAS

vial.jpgThe disorders Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), Variegate Porphyria (VP) and ALAD Porphyria (ADP) are treated initially with the administration of carbohydrate/glucose. This therapy has its basis in the ability of glucose to decrease porphyrin biosynthesis in the liver.
Glucose can diminish excess excretion of heme precursors, which, in turn, can prevent an attack or can hasten recovery from an attack of the acute porphyrias. Therefore, it is suggested that when patients cannot consume carbohydrates due to nausea or vomiting, glucose should be administered intravenously. Some physicians have prepared a standing order for patients who are prone to attacks to help facilitate intravenous glucose in the emergency room. Often this prevents further hospitalization.
Most patients are knowledgeable about the deleterious affect the wrong drug can have on their bodies and are consequently careful about the medication they ingest, but some do not understand the importance of carbohydrates for prevention and treatment of a Porphyria attack.
Because it is a simple therapy, many patients ignore the significance of their carbohydrate (sugar) intake to suppress disease activity. When the Atkins Diet, which was a high protein/low carbohydrate diet, became popular a number of years ago, many Porphyria patients who adhered to this diet became ill. It soon became apparent that their severely reduced daily carbohydrate count exacerbated their Porphyria. In fact, complying with the Atkins plan precipitated attacks in some previously undiagnosed and non-symptomatic individuals.

Monday, November 26, 2018

Support Giving Tuesday

Please support the American Porphyria Foundation today! #GivingTuesdayis a global day of giving focused on organizations that have an impact on something you care about. The APF cares about making each day better for individuals and families living with Porphyria. 
Every dollar counts as we work to educate physicians, raise awareness and promote research!! 
This year Facebook and PayPal are partnering together to match up to a total of $7 million in donations to US nonprofits on #GivingTuesday!
 We appreciate all that our members do each day to help us reach our goals - thank you for considering a donation today. Like, Tag and Share!
Click the link below to donate!
https://www.facebook.com/donate/360039071418367/

Sunday, November 25, 2018

GLOBAL PORPHYRIA ALLIANCE

GLOBAL PORPHYRIA ALLIANCE

The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria.
Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria.

Wednesday, November 21, 2018

WHAT IS NEUROPATHIC PAIN?

What could it be?
Nerve Pain
Take a pain questionnaire by the My Pain Feels Like initiative
 

WHAT IS NEUROPATHIC PAIN?

Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP).

WHAT CAUSES NEUROPATHIC PAIN?

Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as:
Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infection, nerve damage resulting from diabetes mellitus (diabetic polyneuropathy or DPN), multiple sclerosis, or nerve damage in the spine or lower back (low back pain).

WHAT ARE THE TYPICAL NEUROPATHIC PAIN SYMPTOMS?

Neuropathic pain is a chronic pain condition often described by patients with symptoms such as ‘shooting pain’, ‘burning pain’, or ‘stabbing pain’. It can also feel like ‘pins and needles’. In addition, neuropathic or nerve pain patients can suffer from symptoms such as allodynia (when a normally unpainful stimulus such as a light touch or clothing becomes painful) and hyperalgesia (when a mild or moderate stimulus causes severe pain).

HOW IS NEUROPATHIC PAIN DIAGNOSED?

Neuropathic pain is often difficult to diagnose. This can lead to patients with neuropathic or nerve pain being insufficiently treated on a ‘trial and error’ basis that may persist over many months or even years. A correct and early diagnosis is crucial to find the right treatment and to relieve symptoms of neuropathic pain. It is therefore important that patients describe their symptoms in as much detail as possible to their doctor. As part of this process, the doctor will conduct a physical examination and ask about the medical history of the symptoms.

WHAT CAN PATIENTS DO?

There are treatment options available. It is important to get active. Do you have symptoms that you would describe as ‘burning pain’, ‘shooting pain’, or ‘stabbing pain’? Do you have sensitive skin and/or feel a sensation like ‘pins and needles’ on the skin?
If you have chronic pain and think that it might be neuropathic or nerve pain, please fill out the ‘my painquestionnaire’ and see your doctor. It is a very useful tool to improve the communication between patients and doctors, as it supports the doctor in making an accurate diagnosis of the cause of chronic pain. It will be most useful for you to accurately describe your chronic pain, where it occurs on your body and if it is triggered by anything in particular. In preparation for a doctor’s appointment, patients should thoughtfully complete the ‘my painquestionnaire’, print out the results, and discuss them with their doctor. You can read more about possible treatment options here.

Porphyria Post

Porphyria Post

Happy Thanksgiving!

APF Office Closure
We would like to wish you all a very Happy Thanksgiving! For those of you traveling this Holiday, please have a safe and fun trip.

The American Porphyria Foundation will be closed on Thursday, November 22, 2018 and reopen for normal business hours on Monday, November 26, 2018. Please see below for some additional announcements from the APF.

Harvoni Study - PCT
Do you have PCT? Are you interested in participating in research? Do you have Hepatitis C? If you answered YES to these questions, this is for you.

We need YOU for a clinical trial!

The purpose of this clinical trial is to assess whether Harvoni alone is an effective therapy in active PCT patients with Chronic Hepatitis C.

Who can participate?

• Adult patients with PCT who also have Hepatitis C

If you are interested in participating please contact Edrin Williams, Director of Patient Services at the APF office at 301.347.7166 for additional information.
Clinical Trial for EPP - We NEED you!
The Mitsubishi Clinical Trial is in danger of being cancelled if we do not fully enroll with 102 participants. We must have full participation in order to push this new drug toward approval. We know that a Phase 3 trial is very unlikely if our small EPP community does not come together to fill this trial. Adults who participate will pave the way for a near-future pediatric trial.

Here are the facts. We need 102 total participants for this clinical trial. There are 500+ known patients with EPP in the US, including children and older adults. 1 in 4 patients meet the age requirement. Of those approximately 400 patients, another subset cannot participate due to medical exclusions (other needed medications, high liver enzymes, history of melanoma, etc.) To date, the drug has proven non-toxic and there have been essentially no dropouts in this study to date. The promise of a new treatment depends on you.
Call the APF on 866-APF-3635 or 301-347-7166.

We will connect you with a Research Coordinator that will answer all your Questions and concerns. We will work to make this process as easy as possible for you. It is 5 months of your life in order to give a future to ALL with EPP! To date there is no public information on the future of Scenesse. If we are able to get two FDA-approved treatments on the market, it may lower costs. If we do not do all we can as a community, we will have no treatment of EPP.

Bottom line: We need YOU! Please dig deep and consider being part of this changing moment for all with EPP.
Pet Calendar Update!
Thank you all for submitting your pets for the 2019 Pet Calendar Contest.

We have had an overwhelming response of submissions from our community. Please note that we are working diligently to have this calendar ready for you to purchase soon. Stay tuned for more details!

RSVP Today!

Patient Education and Support Meeting

LOCATION
Double Tree Hotel - San Diego - Hotel Circle
DATE AND TIME
12/01/18 6:00pm - 12/01/18 8:00pm
1515 Hotel Circle South | San Diego, CA 92108 | Room:Cortez | Family and Friends are welcome to attend. We look forward to seeing you there.

Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com

American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org

STAY CONNECTED
"Remember....Research is the Key to Your Cure!"

Thursday, November 15, 2018

Michelle Bridges AIP

I spent my whole life with unexplained symptoms. Sometimes my legs would give out, and I would have back pain, abdominal pain, slurred speech, difficulties walking and so forth. When I was 16, doctors found a mass in my brain. After removing what they could, all my health problems were blamed on “post surgical changes.”
michellebridges.jpgIn 2005, the doctors began to wonder about other causes. I was sent to see a Gastroenteritis  and diagnosed with pancreatitis. But there was no explanation for my abdominal pains that would come out of nowhere and then disappear. The doctors decided that is was due to a problem with my digestion and cut part of my bile duct. However, I landed back in the hospital with pancreatitis. Then nothing happened for about eight months.  
At the end of July 2006, I began to have problems again. They put me on Reglan with the intention of running more tests and after about a week, I woke up feeling bizarre. I was in a haze and unable to function. I had called a friend and asked her to take me to the hospital. I turned to walk down the hall towards my bedroom so I could lie down, but my legs would not move. I remember standing there thinking “you bend the knee and extend the leg.” By the time I had dragged myself down the hall, my arms wouldn't cooperate and I fell over.
When the paramedics got the house I swear I asked if I was having a stroke. My son says I just lay there with my tongue hanging out, in and out of consciousness and seizure activity.  I don't remember. The ER released me to my husband with the diagnosis “allergic reaction.” The following day I could not speak. Again, I went to the ER, but this time it was to a different hospital, one covered through our insurance. The doctor told my husband I was being over-medicated, and then a student at the hospital noticed the color of my urine and suggested to the doctor that my condition might be porphyria. She was correct!
I don't remember anything from the end of 2006 to 2008. Treatment for my symptoms made some things worse. I had been active in my church and home schooled other people’s children as well as my own, but I had to stop educating others and withdrew from some activities at church.
We have had a hard time finding doctors who will treat me. This disease is rare and doctors aren't experienced with it. With my new oncologist’s gentle touch and the support of the staff at our new hospital, I have become more active. I am not spending as much time in the hospital, and I still home school my children, write curriculum and resource guides, and do crafts for craft fairs and whatever else I can to support the church and help others. I do all of these activities from my bed because I am too weak and have too much pain to leave the bedroom for long stretches and I get sick so easily. But I do like to have some level of activity in my life and so I try to contribute where I can while being careful of my health.

Wednesday, November 7, 2018

Porphyria Post


Porphyria Post



Last Day to Vote!

Tomorrow is the last day to capture votes for your furry friends! We look forward to sharing the results with our community.

If you haven't already done so, please go to the APF website to see everyone's submissions!

Make sure that you see your share this link and your individual voting pages with your family and friends.

The final 12-month wall calendar will feature your wonderful animals, porphyria facts, tips, and important dates. Voting for the top slots will be held online and will benefit our critical Protect the Future program.


Here’s how it works:





To Vote:
·    ALL photo entries will be included somewhere in the calendar, though the “top dogs” will be featured on the cover and in each month!
·    Starting October 23rd - Your pet’s photo will be posted on the APF website for all to see. You’ll be able to share the link with family and friends to encourage a vote! Anyone can participate with a $1+ donation per vote.

Important Dates:

·    Voting: October 23-November 8
·    Calendars ready for sale and shipping on November 25th!


Please contact Autumnlee at the APF office with any questions at: autumnlee@porphyriafoundation.org or call (301) 347-7166.

GOOD LUCK TO EVERYONE and HAVE FUN!



EPP Clinical Trials - NEED PARTICIPANTS
Are you ready to be a medical hero? A new clinical trial with an oral investigational drug intended to reduce phototoxicity in people living with EPP has begun. Don’t delay!

Pharmaceutical company: Mitsubishi Tanabe
Length on treatment: 16 weeks
Treatment: Oral (pills)
Number of appointments: 7-9 
Arrangements: Includes Travel/hotel/food
Stipend: Each participant will receive a stipend
Locations: New York City, NY/Winston-Salem, NC/Miami, FL/Galveston, TX/Salt Lake City, UT/San Francisco, CA 
How many participants do we need: 102!!!

Please contact the APF at 1.866.APF.3635 if you are interested in participating.

"Remember...Research is the key to YOUR cure!"
Each Step Toward Finding an Effective Treatment is Important!

Website Update!

You are now able to access the new website from any browser and on any device at www.porphyriafoundation.org

Thank you to our members, industry partners, and our brilliant physicians for making this update possible!

RSVP TODAY!
Patient Education and Support Meetings coming your way. Contact the APF today to RSVP! We look forward to seeing you there.

Patient Education and Support Meeting - San Francisco

LOCATION
UCSF Medical Center | 505 Parnassus Ave.| Room: S-157| San Francisco, CA 94143
DATE AND TIME
11/11/18 5:30pm - 11/11/18 7:00pm
Seating is limited. Please RSVP Today!!



Patient Education and Support Meeting - San Diego

LOCATION
Double Tree Hotel - San Diego - Hotel Circle | 1515 Hotel Circle South | San Diego, CA 92108 |
DATE AND TIME
11/11/18 5:30pm - 11/11/18 7:00pm
Room: SOLANA | Please RSVP Today! Please note that there will be a Porphyria Specialist on site. We look forward to seeing you there!






Get Involved




Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com

American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org

STAY CONNECTED


"Remember....Research is the Key to Your Cure!"

The Porphyria story of Victor LaFae with HCP

Porphyria story - HCP - Victor LaFae I’m told that I was a typical happy baby for the first few months of my life. I reached all my mile...