Wednesday, November 27, 2013

In Memory of Ellane Heflin...



 The APF is sad to announce that Ellane Heflin, mother of APF Executive Director, Desiree Lyon Howe, passed away Nov 26 in Destin, Florida at age 85. Ms. Heflin, who had AIP, was an APF member since it was founded 31 years ago.  To encourage others to participate in porphyria research, Ms. Heflin volunteered as a research patient a number of times since 1982 and volunteered for her last porphyria research project at age 84. She was the oldest person and APF member to participate in porphyria research to date.

 She is survived by her children, Elizabeth Ruth Petersen, April Heflin, Deborah Fedele, Dr Joseph Heflin, and Desiree Lyon Howe, and by her grandchildren, Lelia Brougher, Spring Howell, Miranda Dennis, Patrick Petersen, Parker Heflin, Kelsey Heflin, Sarah Taylor and Ian Murdoch, and by her great grandchildren, Elizabeth Brougher, William Brougher, Chloe Mettenbrink, and Gage Mettenbrink and by her sister, Doris Jackson and brother, Louis Workman.

The funeral will take place in Henegar, Alabama on Saturday, November 30, 2013.

We sincerely express our sympathy to Ellane Heflin's family.  Memorials and expressions of sympathy in her memory can be sent to the APF, 4900 Woodway Dr, Suite 780, Houston, TX. 77056.


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

Sunday, November 24, 2013

An Important Message about Panhematin from Desiree Lyons APF Director

It has come to my attention that there is a great deal of misinformation floating around about a new research project with Panhematin . Unfortunately, this misinformation has some truth but is also replete with incorrect assumptions. I am happy to elaborate for any who want to know all about the research. Below is some of the story.

Now for the why hemin/Panhematin is being researched since it has been an effective treatment for decade. Note that the research grant shorn below says for treatment and prevention.. Panhematin is being widely used for prevention of attacks, because many doctors and experts have found it to be highly effective to prevent acute attacks. But that purpose is not on the label. Since it is being used more and more for this purpose , it is important to have research behind it . Some people have very critical attacks that are horribly painful and could be life threatening without treatment. Without Panhematin, I would have died many times. I only wish long ago we would have used it to prevent my attacks.

In addition, the Panhematin label say it is to be used for women with attacks congruent with leuteal phase of the menses. As you all know , it is used for all attacks and in men and women. Therefore, it is important to have this research, too. Therefore, the U.S. Food and Drug Administration just announced it has awarded 15 grants totaling more than $14 million to boost the development of products for patients with rare diseases. Karl Anderson, University of Texas Medical Branch Galveston, Phase 2 Study of Hemin for the Treatment and Prevention of Porphyria Attacks—about $1.5 million over four years. This is actually not much over four years considering the wide range of studies that will be conducted.

Some people are saying that this research is not necessary and that we could and will have heme arginate/Normosang instead. This is not the case. Heme arginate, which has the trade name Normosang, is licensed for use outside the US in a number of countries. Panhematin is only available in the USA unless that is a special request. The APF and Dr. Anderson and other experts tried for many year to get heme arginate to the USA, however, the company would not bring it here. First, there was an issue with the blood bank The blood bank in Finland where it was being manufactured, did not have the requirement of USA blood banks that the FDA required. Also, they would have to spend many millions for research to bring heme arginate here. .

Heme arginate and Panhematin are both owned by Recordati, an Italian Pharma company. Panhematin and heme arginate cost approximately the same Although some feel that heme arginate is more stable, now albumin is being used with both products , not just Panhematin. Seehttp://www.ncbi.nlm.nih.gov/pubmed/1713408 for use.
Knowing all of the story is essential before making assumptions where medicine and treatments are concerned There is much more to all of this but the most important issue is that patient volunteers are needed. We sincerely than all who have volunteered YOU ARE THE MEDICAL HEROS DRIVING US CLOSER AND CLOSER TO A CURE .
IF YOU ARE WILLING TO PARTICIPATE, PLEASE CONTACT ME AT LYONAPF@AOL.COM.
Participant will fly to the University of Texas Medical Branch in Galveston where Dr. Karl Anderson i conducting a number of porphyria research projects. Some of those projects do not require travel but only require your blood and answer questions that are very pertinent to the porphyria research. Many thank, d

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

Friday, November 22, 2013

Holiday Shopping Time! Get your loved ones an American Porphyria Foundation T-Shirt Today!

Want to give your loved one a gift & raise awareness for the American Porphyria Foundation?

American Porphyria Foundation

T-Shirts for SaLE

19.00 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: I must have 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 back of card CVV-.


 Your information is kept secure and never shared or put on a list.
 We can accept will 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 will receive a receipt with Purchase.

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

Research Studies Available! Can you or a family member Participate?

Online: www.RareDiseasesNetwork.org/porphyrias21/Nov/2013

Research Studies Available!


The Porphyrias Consortium is pleased to let you know we are enrolling patients in studies for the following diseases. To read more about each study, including eligibility criteria and who to contact, please follow the links below:

A confirmed diagnosis of a porphyria or have a relative who has been diagnosed with a porphyria

Longitudinal Study of the Porphyrias

Acute Intermittent, Porphyria Hereditary Coproporphyria, or Variegate Porphyria

Clinical Diagnosis of Acute Porphyria

Erythropoietic Protoporphyria (EPP)

Mitoferrin-1 Expression in Erythropoietic Protoporphyria
Measuring the Effects of Isoniazid Treatment on Erythrocyte and Plasma Protoporphyrin IX Concentration in Patients with Erythropoietic Protoporphyria
Erythropoietic Protoporphyrias: Studies of the Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact)

Porphyria cutanea tarda (PCT)

Hydroxychloroquine vs. phlebotomy for porphyria cutanea tarda
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.
Department og Health and Human Services National Institutes of HealthOffice of Rare Diseases ResearchThe 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).NINDS
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.

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

Recordati Rare Diseases, Inc. is committed to providing support to the AIP community.


Recordati Rare Diseases, Inc. is committed to providing support to the AIP community.
 PAN_RECThe Recordati Rare Diseases Reimbursement Support Program is a free service available to patients, caregivers, medical billing staff, healthcare providers, and others who have questions about insurance coverage and reimbursement-related issues including:

·         Billing issues
·         Insurance verification
·         Prior authorization support
·         Insurer education
·         Policy monitoring

Reimbursement Support Contact Information:
Call: 866-209-7604 (M-F 9AM-5PM ET)

For further information, contact the APF:
 1.866.APF.3635.

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

Fundraiser Time with Oksana Henn!



Meet AIP Patient Oksana Henn & Her Fundraiser Event


I have AIP diagnosis for over 17 years already. I was diagnosed in Ukraine after I became completely paralyzed (it took me over 10 years to get diagnosed). It took me 2 years to get back up on my feet and functions again. When I moved to USA (Denver, CO) 15 years ago, I found out about Dr. Anderson and went to meet him to confirm my AIP diagnosis. Ever since that time he has been consulting me and my doctors on how to treat my symptoms and what to do with my AIP in general. Some doctors listen to his suggestions, some don't. Those who do not, think that they know more than AIP specialists and try treating me with different medications and methods that actually harm me. We need more doctors like Dr. Anderson, who actually understands and knows AIP and does everything to help patients like me. Over the years my AIP symptoms have been getting worse. Panhematin is the ONLY medication that treat my AIP attacks time and time again. The APF helped me many times with referrals to doctors, suggestions, and just listening to me. APF, thank you very much for everything you do! I have been enrolled in a few AIP research studies over the years. One of them identified the exact gene mutation that I have. This was completely free for me. Another study that is going on now identified my dad as being an AIP gene carrier. This information will help my family (sisters, nieces and nephews) to prevent from being sick for a long time like me. I want to help APF by running a fund raiser on my site. APF is doing a great job educating doctors to be specialized in AIP and other porphyrias. I want this and other fund raisers that I will have to help pay for education for Protect The Future program. 
Our health and well being depends on them!



Here is a great FUND RAISER for the American Porphyria Foundation:
50% of all proceeds from sales on the site (below) between now and January 1-st, 2014 will go to American Porphyria Foundation.
 Please visit:www.shop.giftbasketmarket.net to order a basket for you and help out your favorite charity! There are different gift baskets for every occasion! Please support the APF & PTF program. Thank you!!!

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

Read about Ruth Taffet

Ruth Taffet

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

I was diagnosed with AIP 45 years ago. My 24 hour quantatative urine was sent to Dr. Watson. The illness began with a ruptured tubular pregnancy. After the operation, I was in extreme pain. I was sent home not being able to retain food or move my bowels and was extremly nauseated. Nine days later the doctor ordered over the phone a triple suppository of compazine. This caused me to faint immediately, and I was rushed to the hospital. My pulse 180, was sent to Booth Memorial in Queens N.Y where they couldn't find out what was wrong, I was given a barium enema, a levine tube, many medications that had disastrous effects, including going into a coma. Fortunately, the doctors that were attending the women in the next bed said, "I know that woman is not crazy." They happened to look in my bedpan and saw red urine. I awoke completly paralyzed. Pins could be stuck all over my body. I couldn't feel anything.
Finally, three months later I was released from the hospital. My hands were shaking, and eventually I couldn't stand the smell of food and was depressed. I was taking a pill that had been killing people in England,. About five years ago, doctors discovered I didn't have any Iron in my bone marrow. Every test proved negative, but in six months of taking iron, my count was normal.
I now have a hemotologist check my blood every six months. Since I had a bout with blisters, I believe I might have HCP. I am eighty years of age, I'm carefull of all medication. I am healthy and only take a mild blood pressure pill. My case was published in the medical journal, Lancet, and was written by Dr. Irwin Cohen in 1962.
"Remember.....Research is the key to your cure!"

Monday, November 18, 2013

Do you think to much? Is it Healthy? How to Stop Thinking too Much


It's a golden rule to think before you speak, but you can run into trouble when you think so much that you fail to act, or think yourself into a state of uncontrollable anxiety. Are you looking for a way to stop thinking too much?

EditPart 1 of 3: Letting Go of Your Thoughts

  1. 1
    Accept that you're thinking too much. Just like eating, thinking is something we need to do to survive, so it is sometimes hard to judge when you are doing too much of it. However, there are several red flags that you are doing too much thinking for your own good. Here are a few of them:
    • Are you consumed by the same thought over and over again? Are you not making progress by thinking about this particular thing? If so, this may be a sign that you should move on.
    • Have you analyzed the same situation from a million angles? If you've found toomany ways to look at something before you decide how to act, you may be being counterproductive.
    • Have you enlisted the help of your twenty closest friends in thinking about a particular thing? If so, then it's time to realize that you can only ask for so many opinions about the same idea before you drive yourself insane.
    • Are people constantly telling you to stop over-thinking things? Do people tease you for brooding, being a philosopher, or staring out of rainy windows all the time? If so, they may have a point.
  2. 2
    Meditate. If you feel like you don't know how to stop thinking, you need to learn what it's like to "let go" of your thoughts, so that it's something you can do deliberately.[1]Imagine that thinking is like breathing; you do it all the time, without even realizing it. But if you need to, you can hold your breath. Meditating will help you learn how to release your thoughts.
    • Just spending 15-20 minutes meditating every morning can make a dramatic impact on your ability to stay in the present and let go of all of your nagging thoughts.
    • You can also meditate at night to help yourself wind down.
  3. 3
    Exercise. Running or even walking vigorously can help you take your mind off of all of those annoying thoughts and to focus on your body. Participating in something particularly active, like power yoga or beach volleyball, will have you so focused on your body that you won't have time for your thoughts. Here are some great things to try:
    • Join a circuit gym. Having to switch to a new machine every minute when you hear that bell ring will keep you from getting lost in your thoughts.
    • Go hiking. Being around nature and seeing the beauty and stillness around you will keep you more focused on the present moment.
    • Go swimming. Swimming is such a physical activity that it's even harder to swim and think.
  4. 4
    Say your ideas out loud. Once you've said everything aloud, even if you're talking to yourself, you've begun the process of letting go. Walk around and pace if you have to. Once you've put your ideas out there, you've begun the process of putting them out into the world and out of your thoughts.
    • You can say them aloud to yourself, your cat, or to a trusted friend.
  5. 5
    Ask for advice. You may have exhausted your own thinking power, but someone else might be able to offer a different perspective that makes the decision clearer. This can help let go of your troubling thoughts. Your friend can make you feel better, can ease your problems, and can also make you realize when you're spending way too much time thinking.
    • Besides, if you're hanging out with a friend, you're not just thinking, right? That's something.

EditPart 2 of 3: Taking Control of Your Thoughts

  1. 1
    Make a practical list of the things that are troubling you. Whether you're writing on paper or a computer, you should first define a problem, write down your options, and then list the pros and cons for each option. Seeing your thoughts in front of you will also help you stop cycling through them in your head. Once you can't think of anything more to write, your mind has done its job, and it's time to stop thinking.
    • If making a list still doesn't help you make a decision, don't be afraid to follow your intuition. If two or more options seem equally appealing, thinking more will not make things clearer. This is when you should listen to something deeper.
  2. 2
    Keep a diary of the things that are troubling you. Instead of lingering over your most persistent thoughts, jot down all of the things on your mind every day. At the end of one week, go over what you've written and make a note of the things that are troubling you the most. You need to deal with those first.
    • Try to write in your diary at least a few times a week. This will help you get used to the idea of a "thinking time" and will help you sit down with your thoughts, instead of having them trouble you throughout the day.
  3. 3
    Have a to-do list. Make a list of all the things you have to do on a certain day. Unless "brooding" is on your list of priorities, this will force you to see that you have more important things to do than to sit around pondering the meaning of the universe! The quickest way to organize your thoughts is to put them into something actionable. If you're thinking that you haven't gotten enough sleep lately, make a plan for getting some Z's pronto instead of worrying about it!
    • The list can be practical and can deal with the bigger things, like: "spend more time with my family."
  4. 4
    Set a "thinking time" aside for yourself every day. This may sound crazy, but picking a time every day for yourself to worry, wonder, be dreamy, and to get lost in your thoughts can help you control your thoughts in a more productive manner. If you need to, give yourself an hour, say, from 5-6:00 every day. Then, try to get the time down to 5-5:30. If an upsetting thought comes up earlier in the day when it's inconvenient to deal with it, just tell yourself, "I'll worry about that at 5 pm."
    • This may sound ridiculous, but you've got to try it before you knock it.



  1. 1
    Solve as many problems as you can. If your problem is that you think too much about nothing, worry for no reason, or think about things you can't control, then there's not much you can do to "solve" the problems that are plaguing your thoughts. But think of the ones you can solve and make an active plan for going about doing so, instead of thinking, thinking, thinking without it going anywhere. Here are some ideas for what you can do:
    • Instead of thinking about whether or not your crush likes you, take action! Ask him or her out. What's the worst that can happen?
    • If you're worried that you're falling behind in work or school, make a list of all of the things you can do to succeed. And then do those things!
    • If you like to think, "What if..." a lot, try to do the things that are feasible.
  2. 2
    Be social. Surrounding yourself with people you love will keep you talking more and thinking less. Make sure to get out of the house at least a few times a week, and make a point of working to develop lasting and meaningful relationships with at least two or three people in your area that you can hang out with. You'll be much more prone to thinking if you spend a lot of time by yourself.
    • Alone time is definitely a good thing, but it's important to mix up your routine with some time to hang out with your friends, let loose, and have fun.
  3. 3
    Get a new hobby. Take the time to explore something completely different and out of your comfort zone. A new hobby, no matter what it is, will keep you focused on the task at hand as well as interested in getting results. Don't think that you already know what you like and don't need any more distractions. Trying a new hobby can help you live in the moment and focus on your art, your craft, or whatever. Try some of these:
    • Write a poem or a short story
    • Take a night class in history
    • Take a pottery or ceramics class
    • Learn karate
    • Take up surfing
    • Try biking instead of driving
  4. 4
    Dance. There are a number of ways to dance -- alone in your room, out at a club with your friends, or even by taking a dance class such as tap, jazz, foxtrot, or swing dancing. Whatever form of dance you encounter, you'll be able to move your body, listen to the lyrics, and live in the moment. It doesn't matter if you're a terrible dancer. In fact, that you would get you even more focused on your dance moves and less focused on all of your niggling thoughts.
    • Taking up a dance class would be a great way to start a new hobby and to dance.
  5. 5
    Explore nature. Get outside and start looking at the trees, smelling the roses, and feeling fresh water on your face. That will help you live in the moment, embrace nature and the impermanence of your existence, and to see a world outside of the one you created inside your own head. Put on your sunblock and your sneakers and stop being cooped up in your bedroom.
    • Even if you're not into hiking, running, biking, or surfing, make a goal of walking through a park at least once or twice a week, taking a weekend trip to something nature-related with your friends during your next vacation, or just going somewhere were you can stare out at a big blue lake or ocean.
    • And if that seems like too much work for you, just go outside. Being out in the sun will make you happier, healthier, and less likely to brood.
  6. 6
    Read more. Focusing on the thoughts of other people will not only give you insight, but will keep you from thinking about yourself too much. In fact, reading biographies of inspirational men and women "of action" may inspire you to see that behind every great thought, there is an equally great action. And reading books can also not make you want to do anything except for escape to a new world, which is also nice.
  7. 7
    Make a gratitude list. Every day, make a list of at least five things you are grateful for. This will make you focus on people and things instead of thoughts. If every day is too much, try doing it every week. Mix it up. Every little thing counts, even the barista who gives you a free refill of your coffee.
  8. 8
    Appreciate beautiful music. Listening to a great song can make you feel in touch with the world outside your own head. You can do this by going to a concert, playing an old CD in your car, or even getting a record player and some LPs and going old school. Close your eyes, soak in the notes, and live in the now.
    • It doesn't have to be Mozart or something meaningful or hoity-toity. Listening to Katy Perry can do the trick too!
  9. 9
    Laugh more. Be around people who make you laugh. Go to a comedy club. Watch a comedy or a TV show with a funny cast that you really like. Watch some funny YouTube videos. Do whatever you have to do to make yourself crack up, toss your head back, and not care about all of the things that are on your mind. Don't underestimate the importance the role of laughter plays in your mental health.

Advance Care Planning- Prepare NOW!

Making decisions in health care and ethics. Why prepare?  Prepare for the unexpected. It seems we often go through the motions of prepar...