Skip to main content

Posts

Showing posts from November, 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 Hen…

An Important Message about Panhematin from Desiree Lyons APF Director

Desiree LyonIt 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 …

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 FoundationT-Shirts for SaLE19.00 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 r…

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 porphyriaLongitudinal Study of the Porphyrias Acute Intermittent, Porphyria Hereditary Coproporphyria, or Variegate PorphyriaClinical Diagnosis of Acute Porphyria Erythropoietic Protoporphyria (EPP)Mitoferrin-1 Expression in Erythropoietic ProtoporphyriaMeasuring the Effects of Isoniazid Treatment on Erythrocyte and Plasma Protoporphyrin IX Concentration in Patients with Erythropoietic ProtoporphyriaErythropoietic Protoporphyrias: Studies of the Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact) Porphyria cutanea tarda (PCT)Hydroxychloroquine vs. phlebotomy for porph…

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.
The 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. …

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.Fi…

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

Letting Go of Your ThoughtsTaking Control of Your ThoughtsLiving in the Moment
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 1Accept 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…