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Showing posts from November, 2017



Hey everyone! The APF is creating our own version of a "Kid's Corner" focused on children with EPP. Our website will soon have a section called Shadow Jumpers. This will be a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear, what to do for fun, insight for parents and so much more. We need your help to get started! We are looking for YOUR tips and tricks on managing EPP. If you are a caregiver, please ask your child with EPP to share their ideas through you. These could include... What clothes and trends do you use when covering up from the sun?·What are the ways you adapt to do certain activities outside?·What are fun things you do to pass the time inside while the sun is out?·What have been your best vacations?·How do you manage in the car? Learning to drive?·What do you do when you feel sad or left out?·How do you manage going to school?·How do you describe your EPP to other people…


The APF is participating in #GivingTuesday on Tuesday, November 28 - a global giving movement that has been built by individuals, families, organizations, and communities in all 50 states and in countries around the world. Millions of people have come together to support and champion the cause they believe in helping. We hope that you choose the APF! Each and every donation to the APF will have a huge impact toward helping people impacted by Porphyria. Get ready to join the movement and share with your community!!…/support-american-porph…

Part 6 Everyone, Regardless of Age, Can Be Invisibly Disabled

6. Everyone, Regardless of Age, Can Be Invisibly DisabledAll of these things are extremely problematic because the chances are high that everyone living will have an invisible disability eventually. As with everything, the longer you live, the more chances you have to experience something. However, just because age is correlated with illness doesn’t mean that age alone causes illness. Certain illnesses are just a matter of time and chance, yet health is treated as a static reality and youth as invulnerability. If you only view illness as an age-related event, you can’t fully advocate or recognize the millions of children and young adults who are afflicted. Even doctors who know I have chronic illnesses have still referred to me as healthy, as if my lack of years automatically cancels out the fact that some days I’m about as mobile as a corpse. Just because some of us are “young” doesn’t automatically make us healthy. It erases our experiences and makes us feel even more useless when compar…

Part 5. The Absence of Invisible Illness in Accessibility Talks is Problematic

5. The Absence of Invisible Illness in Accessibility Talks is ProblematicSpeaking of ineffective, even those who are active disability advocates fail to take into account the intersections of disability with other identities and realities. Even certain types of disability are pushed to the margins. The most common invisible illnesses spoken of are mental disorders like schizophrenia and bipolar disorder, along with the neurodivergent experiences of autistic people.
 But this means that anyone without a popularized chronic illness is marginalized within both media and disability movements. There are plenty of disabled people saying they wanted to be treated like they’re normal, but for those of us with chronic pain, that’s the opposite of a solution. Treating us like “normal” people, or even other disabled people, will absolutely make things worse. Recently, I attended a disability festival. It was the most disability-inclusive environment I’d ever been in, with sections for the deaf, thos…

Happy Thanksgiving 2017

Happy Thanksgiving everyone 2017

Part 4. The Pain Scale Is Useless to Us

4. The Pain Scale Is Useless to UsThere’s that pain scale, numbered one through ten, with increasingly dour expressions on the faces of the metaphorical patient. But the problem is that this scale is based on being healthy with a temporary illness. It’s not properly designed for those who never have a day pass without being in pain. Those of us with chronic illnesses are masters of coping. We learn to smile through the pain and anguish, we conserve what little energy we have by not bothering to cry, and we count out our spoons to figure out how much we can get done in a day. Part of the reason it’s so hard to believe that many of us are truly sick is because of the ways we cope with our pain. It’s more than most people will ever experience, yet we have no choice but to bear it. We only break down when we have the spoons to break down. Even our doctors become lightweight suspicious or reluctant when we come across as cheerful even while our bodies feel like they’re on fire. There’s this me…

Porphyria Post

The American Porphyria Foundation will be closed on Wednesday, November 21, 2017 in observance of Thanksgiving and will re-open for normal business hours on Monday, November 27, 2017.  For emergency medical attention, please go to your nearest emergency room and contact your primary care physician. For all other issues, please direct your needs to the APF office staff via email. Your messages will be answered accordingly. Desiree Lyon Kristen Wheeden Edrin Williams We hope that you enjoy this Thanksgiving holiday with your loved ones.  Please see below some additional announcements from the APF. Want your physician to become better educated about your disease?  Personally invite them to this important symposium!!!  2018 Heme Biosynthesis and the Porphyrias: Recent Advances Orlando, Florida - January 12-14, 2018 This three day symposium will focus on the most recent findings on the molecular biology and regulation o…

Part 3. Not Understanding the Difference Between Laziness, Leisure, and Need Prevents Care

3. Not Understanding the Difference Between Laziness, Leisure, and Need Prevents CareNo one helps, and everyone tends to be skeptical about invisible illness, because they assume laziness is more likely. Especially here in the United States, where being weak, injured, or otherwise unable to work is viewed as despicable. If we are each the masters of our own fate, then no one should have to take care of us and nothing should be given to us for “free.”
Just try going through the social security process or trying to keep a job with an illness that leaves you unable to move or function for days, for weeks, for months. Worse than that, many of the services disabled people need are viewed as luxuries, as leisure activities. If you’re rich or well off, it’s acceptable to get regular massages, to take vacations, to have housecleaners and in-home nannies. You might be made fun of for it, but it’s not considered unusual. Yet when my fibro keeps me from doing basic chores or shopping or dealing with…

Part 2. Treating People With Chronic Illness Like They’re ‘Faking It’ Is Really Harmful

2. Treating People With Chronic Illness Like They’re ‘Faking It’ Is Really HarmfulThat’s not a hyperbole. My misdiagnosis with Bipolar Disorder resulted in my being medicated with a substance I was highly allergic to. I ended up having seizures after the first dose. It scared me so much that I didn’t seek any sort of treatment for a couple more years. Meanwhile, my endometriosis got worse, eventually leaving me unable to attend classes or work. I was bedridden, without the energy to fight for my place in college, and unable to explain to any of the administration why I was ill. Without the understanding of how my health affected my ability to attend, I had no recourse or strength to fight back when they decided to end my time at college. Rather than working with me on a solution, I ended up with a mountain of debt, no degree, and no income. Many people with chronic illnesses are given options that are difficult, irrelevant, or downright impossible for us. Our actual capabilities aren’t tak…

Porphyria Post

Want your physician to become better educated about your disease?Personally invite them to this important symposium!!! 2018 Heme Biosynthesis and the Porphyrias: Recent AdvancesOrlando, Florida - January 12-14, 2018
This three day symposium will focus on the most recent findings on the molecular biology and regulation of heme biosynthesis and the clinical features, pathophysiology, and current treatment of the acute hepatic and erythropoietic porphyrias. Day 1 will be devoted to the clinical aspects and current treatments of each Porphyria. Days 2 and 3 will focus on the latest research findings on heme biosynthesis and emerging molecular-based treatments for the porphyrias. Also, there will be a special session for patients on the latest advances in the Porphyrias.
This symposium is open to all healthcare professionals including clinicians, researchers, nurses, genetic counselors, Junior Faculty, Pre/Post Doctoral students, fellows and medical students. 
The Symposium offers up to 25.5 …

Part 1 Chronic Illness Has Unexpected, Horrible Side Effects

1. Chronic Illness Has Unexpected, Horrible Side EffectsUnlike popular medical shows like House, many people with an invisible illness can actually have more than one. It’s like winning the world’s worst lottery. The first illness I was diagnosed with was endometriosis. Then the doctors realized I had PCOS (polycystic ovarian syndrome). Then – due to my stressful life circumstances, my traumatic history of sexual and emotional abuse, my intense work schedule, and the fact that my body was so used to being in pain – one day I woke up in an immense amount of pain that simply never went away. Fibromyalgia: the nervous system literally operates on 100%, constantly engaging the flight or fight response until all it can do is turn on itself, electrocuting you from the inside, causing body-wide muscle aches, disrupting your temperature, making all of your senses even more sensitive, and leading to chronic fatigue and brain fog. That’s not all it does; that’s just the beginning. Yet this is the a…

6 Things You Need to Know About Invisible Illnesses Part 1 of 6

6 Things You Need to Know About Invisible IllnessesMarch 12, 2016 by Michon Neal Even though Porphyria is not mentioned here, most if not all of us can understand these 6 Things of Invisible Illness Part 1 of 6 Imagine being so frozen with fear and dread that you refuse to get out of your car. Even though you know you’re sick, you know as soon as you step out that people will see your lack of a wheelchair or crutches and do a double take of the handicapped spot you’ve parked in. The sad truth is that unless your disability is blatantly physically obvious, able-bodied people assume you’re just like them. Yet the truth is that about 96% of us disabled people have what are called an invisible illness. And because they’re invisible, people assume we’re faking all the time. And the scariest thing is that many painful chronic illnesses go without acknowledgement or recognition from society, even within disability circles. An invisible illness can be mental, physical, or both. There usually aren’t…

Tom Collier A Long Road to Diagnosis EPP

Tom Collier: A Long Road to Diagnosis EPP Conference Call 

 For EPP patients it would be wonderful to be able to withstand and even enjoy more time in the outdoors, and to gain potential benefits for liver health. Being able to better avoid flare-ups from EPP is an important treatment goal, as Dr. Bloomer and Dr. Roth both noted that the main treatments available for the pain of EPP symptoms are aspirin, Tylenol (acetaminophen) and cold compresses. Dr. Bloomer encouraged everyone interested in the trials to stay in touch with the APF—we will let you know as soon as we have concrete information about afamelanotide trials. Almost all of the call participants wanted to know if they will be able to participate in afamelanotide trials and when the trials will start. Here we summarize some of the remaining issues addressed during the call—a full account is on our website.

 • Liver disease. Dr. Bloomer stressed that very few people with EPP will develop liver disease, and that the best way to …

Porphyria Post Important News

PORPHYRIA POST - Important News

PATIENT MEETING - Atlanta, GA Members in the Atlanta, GA area are invited to attend a Patient Education and Support Meeting.  There will be a presentation and question/answer session with an on-site Porphyria expert (Dr. John Phillips).  Come meet old and new friends who share your experiences with Porphyria. Please RSVP to Edrin Williams in the APF office at 1.866.APF.3635 We look forward to seeing you there! Please see the invite below for additional meeting details.
SET YOUR DVRs - Out of the Shadows Emmy nominated Dateline NBC documentary "Out of the Shadows" will re-air on Wednesday, November 8, 2017 at 4:00 AM.  Please set your DVRs to watch this important documentary featuring EPP.
You can also watch the full "Out of the Shadows" episode here:


The Cook family is preparing to put…