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Showing posts from December, 2012

Life with Chronic Pain: A How-to Guide, What can you learn?

      Sue Falkner-Wood       Life with Chronic Pain: A How-to Guide
Choosing how you live with pain  I’ve had a bad week. You would think that after all the years I’ve lived with sacroiliac joint pain I would do a better job of managing my pain and inflammation. But there are still many times when the pain-filled days outnumber the pleasant ones. I don’t like to talk about my pain, perhaps because I am tired of hearing my own complaints. Thirty years of nursing probably adds to my dislike of complaints. I also have come to realize that complaining does very little good for me or those around me. I try to save the complaining for the big times when I just can’t hold it in any longer and the tears, the bitchy spirit and inactivity are all forced upon me. And then it all passes. But for the sake of getting to know each other, I will explain what it is like to suffer from my particular malady. It is probably more accurate to describe it as the worst of a long litany of problems that I endure. …

Longitudinal Study Underway! We still need YOU!

Longitudinal Study Underway   The Porphyria Longitudinal Observational Research Project is underway.  The objective of this protocol is to conduct a five year, multidisciplinary investigation of the natural history, morbidity, and mortality in people with porphyrias.  In addition, the purpose is a long-term follow-up study of a large group of patients with the various porphyrias, which will provide a better understanding of the natural history of these disorders, as affected by available therapies, and to aid in developing new forms of
treatment.  You have the opportunity to be part of this important project  and help advance research by
answering the most important and often perplexing questions about porphyria. As part of the research,
the patient volunteers will be followed longitudinally for long term survival, development of disease complications and outcomes of commonly used treatments, as well as more advanced treatments, such as liver or bone marrow transplantation.  Research…

Safe/UnSafe Drugs In Acute Porphyria's

Safe/Unsafe Drugs    Dr. Peter V. Tishler, who is a porphyria expert at Harvard/ Brigham and Women’s Hospital in Boston, has been instrumental in overseeing and updating the APF Safe/Unsafe Drug
List for acute porphyria.  Dr. Tishler is kindly updating the list again and wants your input.  Therefore, if
you have been negatively affected by a specific drug, please contact the APF.  We will then put you directly in contact with Dr. Tishler to discuss your experience.  When you report a drug, please have on
hand, the name of the drug, the dose, and a synopsis of what happened to you when you took the
drug.  As you know, the Safe/Unsafe Drug List is extremely important for people with acute porphyrias,
so your input is very important. It is often a lifesaving tool for the patients and their doctors.  
Dr. Tishler is a clinician/researcher in human genetics, including polycystic kidney disease, chronic obstructive pulmonary disease, Fabry’s disease, and the porphyrias.  We are fortunate t…

Winterize Your Skin~Why & How

You put antifreeze in your car each winter to protect the engine against the cold.  It's equally important to take good care of your skin and guard it against the harsh winter weather.  Here are a few steps to help you protect and nurture your skin against the elements.

(1.)  Don't for go the sunscreen just because it's cold and dreary outside.  Stick with an SPF of at least 15 or higher you know what to use you EPP & PCT folks.  And don't forget a sun blocking balm for you lips to.

(2.) Humidify the air in your house, which may be drier than usual due to the heating system.  Try using a mist humidifier in your bedroom at night.  They are small, to large in size quiet and if you have allergies like I do it really works.

(3.)  Cut back on the long HOT showers.  They might feel good while you're muscles hurt and need relief, but they can really dry out your skin.  Opt for a shorter, warm shower instead.  An ideal time to moisturize is after a shower.  You see the…

Quick health Tip! Got Yogurt? Try some tonight.

Quick health Tip!  
Got Yogurt?
Your mom was right:  Yogurt really is good for you.  In fact, a new study confirms that it's good for your gut.  According to a study in the May 9, 2012, issue of the Journal of the American Medical Association, "Consumption of probiotics (live microorganisms, which may occur naturally in foods such as yogurt, intended to confer a health benefit when consumed) is associated with a reduced risk of antibiotic-associated diarrhea, a common adverse effect of antibiotic use."  Try to stick with the low-fat kinds of yogurt, and always watch the sugar content too.

Setting Goals for Success

Your Opinion Please! Here's our question of the month. How likely are you to set new goals for your health? I'll definitely be setting new goals! I plan to set new goals I know I should do this, but I'm not sure if I'll do it I don't usually set goals and so far I'm not planning to www.porphyria click on Submit to read more: Setting Goals for Success
This time of year, many people start to think about the “R” word...“Resolution.” While the holidays often trigger this, it’s important to keep in mind that positive change can and should happen any time of the year. When you follow the “setting goals for success” approach—small, realistic goals—you’ll give yourself the best possible chance to succeed. By achieving smaller, more attainable goals, you can build on your success step by step, adjusting your goals accordingly as you move forward with your new plan. Why set goals at all? This is a great question. Setting goals is basic and it helps you get a clear u…

8 Tips For Healthy Living On The Go

8 Tips For Healthy Living On The Go

(Photo from here) Are you a busy entrepreneur or employee who is usually on the go and doesn’t have a lot of time, but still wants to make 2013 the year that you get more healthy? Don’t worry, you’re not alone. Most people want to get healthy, more fitter and look younger yet they can’t seem to find the time for it. In fact, I have seen advertisements on TV since the new year for at least 7 different fitness workouts by various celebrities and actresses, but I wonder how many people will actually stick to the plans when they purchase it. Listen, if 2013 is going to be different for you, your body and your family, then it’s time to buckle up and find new habits that will serve you better. Don’t you agree? Healthy living doesn’t have to be hard, it was never created to be. But it does require a small amount of commitment and a big love for being refreshed. Here are eight tips for healthy living on the go: 1. Enjoy a pint of water first thing in the mor…

News Bulletin....Please Read Over

News Bulletin....
Lundbeck Pharmaceutical announced that they have sold Panhematin to Italian drug company, Recordati.
Italian drug maker Recordati has signed an agreement for the acquisition of all rights concerning a portfolio of products indicated for the treatment of rare and other diseases and marketed mainly in the USA, from Denmark' Lundbeck(LUND: DC). The closing of the transaction, is expected to take place in the first quarter 2013, and is subject to certain conditions.
The acquired portfolio will be marketed in the US by Recordati Rare Diseases, a wholly-owned US corporation. The main product in the portfolio is Panhematin (hemin for injection) for the amelioration of recurrent attacks of acute intermittent porphyria.
"The acquisition of this portfolio of products is a confirmation of Recordati's intention to become a leading player in rare diseases worldwide and it will reinforce Recordati's entry into the Hematology and Oncology fields (almost 50% of approved…

Support the American Porphyria Foundation

Support the American Porphyria Foundation
Please support  the American Porphyria Foundation today. When you support the APF, you are making a contribution to an organization that provides solid medical information, hope and essential support to those affected by porphyria. You can be proud to be an integral part of the help we provide patients on the road accurate diagnosis, proper care, and hopefully someday a cure.

We welcome donations by phone, mail, fax, or online. Please call us with toll free at 1-866-APF-3635 Monday-Friday from 9:00 a.m. to 4:00 p.m. CST. We accept VISA or Mastercard.
You may choose to honor a friend or loved one with your donation, or to remember someone with a memorial gift.
 You can give online with a major credit card via PayPal:

Or you can click here to fill out and print a donation form, which you may fax or mail to our office:

American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056

Would you like to share your Porphyria Story?

If you would like to share your story about your Porphyria please email me your story, name and type.  By taking some time to think about your experience I hope that it will encourage others to cope and learn what each of us go through on a daily basis.

I do have some additional wristbands 2/6.00 shipping is free and 100% go to the APF for Protect the Future Program.  You can email me at  I have a few Blue and purple left.

TESTING INFO Dr. Robert Desnick , head Mount Sinai Med School Genetics and Dana Doheny

TESTING INFO Dr. Robert Desnick , head Mount Sinai Med School Genetics and Dana Doheny
Porphyria Biochemical and DNA Testing
There are two types of testing that are used in the diagnosis of Porphyria: (1) biochemical testing on urine, blood, and stool to measure the amounts specific porphyrins and porphyrin precursors and (2) DNA analysis to identify the causative mutation (or change) in a specific Porphyria gene. When an acute porphyria is suspected, the first-line of testing that is recommended is porphobilinogen (PBG) and d-aminolevulinic acid (ALA) measurements on a urine sample that has been protected from the light by wrapping in tin foil. Measurement of total porphyrins in urine can also be done to help differentiate a specific acute porphyria. The urine can be either a random sample or a 24-hour collection, with the urine collected at the time of an attack prior to any treatment, including carbohydrate loading, glucose infusions, or hemin, and analyzed at an experienced lab. Whe…

FDA Honors APF Executive Director, Desiree Lyon Howe

FDA Honors APF Executive DirectorDesiree Lyon Howe

 Our very own APF Executive Director receives a great honor.....
January 4, 2013 will mark the 30th Anniversary of the enactment of theOrphan Drug Act. In recognition of this important legislation and accomplishments of members of the rare disease community in their efforts to support and develop treatments for individuals with rare diseases, the Federal Drug Administration plans to highlight 30 Heroes who have made clinical, research, advocacy and regulatory contributions over these many years.
The Office of Orphan Products Development (OOPD) plans to showcase the 30 Heroes on January 7, 2013 during a program that includes invited presenters such as Commissioner HamburgFrances Collins, Director, NIH;Representatives Henry Waxman and Orrin Hatch, or their designees; Peter Saltonstall, CEO, NORD; and Abbey Meyers, as well as former and current OOPD staff.
One of these Heroes is Desiree Lyon HoweCo-Founder and Executive Director of the…

Vickie Gehm, daughter of Judy Coley (PCT) Story

Vickie Gehm, daughter of Judy Coley Type of Porphyria:  Porphyria Cutanea Tarda (PCT) I was almost 16 when my mother passed away from porphyria in 1982. She was technically diagnosed with PCT. At one point, my mother was on the court of our town's 100th year celebration and she looked absolutely beautiful. This was before I was born and she seemed extremely happy and radiant! From what I remember, my mother always had something wrong, but local doctors were diagnosing her incorrectly and really weren't sure what was going on with her. Finally, someone sent her to Mayo Clinic and they gave a name to her symptoms. They seemed to do everything that they could for her at the time. I was an only child and this was difficult to figure out and understand, but looking back, I think I now appreciate my mother more than ever.
She always wore clothing that would have her blend more into the crowd instead of something that would draw attention to her appearance, She also kept her hair sh…

Can positive thinking make you well?

Can positive thinking make you well? By Deepak Chopra, Special to CNN updated 6:10 PM EST, Mon December 5, 2011 There is much to be gained and no risks involved in trying to reach the best state of mind possible, the author says. STORY HIGHLIGHTS Studies show contradicting data on whether positive thinking can aid healthDeepak Chopra: Placebo effect proves thinking is medicine and can be helpful if done properlyThe real point isn't to rescue a dying patient but to maintain wellness, Chopra says Editor's note: Deepak Chopra is a mind-body expert who specializes in integrating the healing arts of the East with the best in modern Western medicine. He is the founder of the Chopra Foundation, a senior scientist for the Gallup Organization and a best-selling author. Learn more at (CNN) -- Observers may have noticed recently that mainstream medicine is taking a harder line against positive thinking. Surveys of the leading research in the field conclude that recover…

Wash Hands to Stay Healthy

Most of us know to wash our hands before eating or after handling garbage, but are you washing the correct way?  What about those not-so-obvious places where germs can hide?  Here are some things to remember when it comes to washing hands and avoiding bacteria.  According to the Centers for Disease Control and Prevention, one of the most important steps in stopping the spread of disease is washing hands with soap and clean running water.  To properly wash hands, wet them first and apply soap.  Lather the soap by scrubbing palms, the backs of hands and under fingernails.  Rinse well and dry thoroughly.

Soap and running water aren't always available, so carry antibacterial gel as a backup.  It doesn't kill all germs, however, so don't use it exclusively.  The CDC recommends using a gel with at least 60 percent alcohol.  When using antibacterial gel, rub hands together to spread the gel over palms and fingers until skin is dry.

Did you know that Cold and Flu viruses can survi…

Life Quotes & What they mean to you.

Life Quotes “If you understand everything, you must be misinformed.” “People only treat you one way, that’s the way you allow them.” Never regret something that once made you smile. Everything is going to be alright! Maybe not today, but eventually. Work diligently, Live simply, Think quickly, Fight fairly, Give generously, Laugh loudly, Pray faithfully, Love deeply. ‎”Things do not change. We change.”
~Henry David Thoreau ‎” Life is what happens to you while you are busy making other plans.” ~John Lennon “Personality is to a man what perfume is to a flower.” ~Charles M. Schwab “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” -H. Ford What oxygen is to the lungs, such is hope to the meaning of life.
~Emil Brunner ‎”Knowledge speaks, but wisdom listens.” -Jimi Hendrix Mother Teresa: “Not All of us can do great things, but we can do small things with great love.” Never let your past experiences harm your future. Your pas…