Monday, November 20, 2017

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

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

No 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 strict work schedules, I am looked upon with scorn and disbelief.
Most people have no idea what it’s like to be chronically ill. They take their health for granted. They view it through their lens instead of through our eyes.
And of course, if they did what we did – or, rather, what little we’re able to – it would be because they were being lazy or seeking out a luxury.
In-home care, service animals, and pampering activities are often necessities for people who have painful chronic illnesses. It’s the only way to lessen our symptoms and be able to have enough spoons (energy) left over to take care of ourselves.
We are not and never will be healthy.
But we’d like to get as close as we can. That involves those services and relaxation activities that everyone else takes for granted. Because while we have some “good days,” that doesn’t mean we’re actually feeling better.
Which actually leads right into the next problem.

Friday, November 17, 2017

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 Harmful

That’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 taken into account. And people figure, if healthier people can do it, we should be able to.
But for those of us with invisible illnesses, being treated appropriately can mean the difference between life and death. Some of us are given the wrong medical care (or worse, unsympathetic care).
This lack of acknowledgement occurs in many ways. People don’t think you really need that handicapped seat on the bus. They report you for having a handicapped sticker when clearly you can walk. They fire you from your job because they’ve never heard of your illness.
Many of us are accused of faking our illnesses when we need to ask for certain things: like asking that places be fragrance-free, needing to leave a loud party, or needing to take three naps in one day.
People tend to try to help when we don’t actually need it and then fail to offer assistance when we really need it. Paying attention, learning about illnesses, and listening to our experiences goes a long way to ensuring we can get the help we need.
Each chronic illness manifests in different ways. Sometimes we’re capable of certain things and other times we’re not. Checking in with us at each step along the way – for any activity – is best. Doing your own research on our conditions will give you a better understanding of our needs. It’ll also help us to save our spoons for getting through our day.
In many cases, it’s healthier for us not to push through our pain. It’s better not to force ourselves into uncomfortable situations.
And it certainly won’t help anything to add on stress (no matter how little) to our day.

In the end, it’s better not to make assumptions that make our days and lives harder.

Wednesday, November 15, 2017

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 Advances

Orlando, 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 CME Credits. The Registration fee includes meals and the poster reception. Orlando has an international airport and outstanding attractions such as Disney World and Universal Studios. The hotel rates are attractive ($133/night plus tax, single or double), with parking, Internet, and resort fees included. The room rate is available for three days after the symposium, on a first come basis.

To share this information with your doctor, you can provide them with the registration link or print and share the attached brochure and take to your appointments with you: 
 Save the Date2
Save the Date1

Part 1 Chronic Illness Has Unexpected, Horrible Side Effects

1. Chronic Illness Has Unexpected, Horrible Side Effects

Unlike 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 actual slippery slope of chronic illness. If you have one already, you’re more likely to develop others.
I didn’t just develop full-blown fibromyalgia; I also found myself depressed and anxious from dealing with each of my physical illnesses and painful history. My PCOS alters my hormone levels, which leads to cyclic depression that matches my menstruation. Add that to the PMDD, and you have my very many suicide attempts.
Pregnancy and menstruation are dangerous for me in ways most people don’t realize. When I’m unable to receive the care I need and when others belittle or don’t understand what I’m going through, it can lead to isolation, depression, and anxiety.
All of my symptoms worsen when life circumstances are also stressful. In societies where simplicity is an ideal, the complexities of living with a chronic illness that no one else can see can make life that much harder.
Sometimes, it can even lead to death.
When you don’t realize that it’s never just one thing affecting our health, but everything, then you can better understand our fatigue, our depression, why we say we can’t do certain things.

You’ll understand that pressuring us about work, education, or other “normal” activities only adds to our stress, which makes every part of our illness worse.

Monday, November 13, 2017

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

6 Things You Need to Know About Invisible Illnesses

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 too many outward signs of said illness, which is why the phrase “but you don’t look sick” is both widespread and completely missing the point.
Take me, for instance.
I look like a rather healthy and young person. And yet, I have maybe ten invisible illnesses. Starting with my very first menstrual cycle, I spent two weeks out of every month doubled over in pain, wanting to kill myself, being told it was all in my head.
I grew older and eventually the intense pain spread to the rest of my body. And as the sexual and emotional abuse worsened, so did my mental health. Eventually I became a bit of a shut in.
Then I began receiving worse and worse diagnosis of chronic – invisible – illnesses.
The most debilitating ones are endometriosis, Polycystic Ovarian Syndrome, Premenstrual Dysphoric Disorder, and fibromyalgia. I don’t suffer as much from my Post-Traumatic Stress Disorder anymore, but I do still deal with secondary depression and anxiety.
Most of these are things people have never heard of, or ones that people didn’t realize could apply to people like me.

Most people lack the information or experience to empathize with our struggles. So here are six experiences you may never have realized people with chronic illness have to deal with.

Thursday, November 9, 2017

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 prevent liver disease is through vigilance and prevention: protect your skin carefully and have your doctor check your protoporphyrin levels at least once a year. 

• Surgical lights. Dr. Bloomer said it is absolutely necessary to cover surgical lights with UV protective films in EPP liver transplant surgery to prevent burns to the skin and internal organs. It is good caution to use the same films in other surgeries on EPP patients as well. 

• Drug safety in EPP. Both doctors stressed that EPP patients should avoid drugs, like estrogens, that are known to block the flow of bile. But Dr. Bloomer cautioned against confusing the medication issues in EPP with those in the acute porphyrias—the drug precautions for acute porphyrias do not apply in EPP. • Donating blood, organs and bone marrow. EPP patients should absolutely not donate bone marrow, to avoid giving EPP to the marrow recipient. Donating whole blood and organs other than the liver should be safe. 

• Current recommendations for the annual blood tests for EPP patients are on our website at www.porphyriafoundation. com/about-porphyria/types-of-porphyria/EPP ~ Dr. Roth’s recommendations for an EPP medic alert bracelet: www. ~ For UVF protection, Dr. Roth recommended Llumar auto glass film: ~ COTZ Total Block (with Titanium Dioxide and Zinc Oxide), available from ~ and others, as sunblock; and mentioned the Solumbra line of clothing from 65077 XT , not suo H, 087 eti uS, ya wdoo W0094 det seuqer eci vr es sser ddA The information contained on the American Porphyria Foundation (APF) Web site or in the APF newsletter is provided for your general information only. The APF does not give medical advice or engage in the practice of medicine. The APF under no circumstances recommends particular treatments for specific individuals, and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment. All information and content on this Web site are protected by copyright. All rights are reserved. Users are prohibited from modifying, copying, distributing, transmitting, displaying, publishing, selling, licensing, creating derivative works, or using any information available on or through the site for commercial or public purposes. 

Tuesday, November 7, 2017

Porphyria Post Important News

PORPHYRIA POST - Important News

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.
 Meeting Invite Atlanta

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 on another fantastic barrel race.  As you may know, the Cook brothers, Cason and Caul, have EPP and have set a great example about enhancing awareness of the disease in their community.  The shadow race will be held in their hometown of Vernon, Texas. All proceeds will benefit the American Porphyria Foundation.

 Barrel Race

Mark your calendars to join the American Porphyria Foundation and the Genetic Disease Foundation along with expert physicians from around the world!
January 12-14, 2018
Patient Mailer 
Click on the link below to view the agenda and register for Clinical Day for Patients. We look forward to seeing you there. If you have any additional questions, please contact the APF at 1.866APF.3635.

ALNYLAM TRIALS - Recruiting participants!

The Alnylam Trials for Givosarin will begin soon. The purpose of this study is to evaluate the use of this medication to prevent or reduce attacks and symptoms in those with an acute porphyria (AIP, HCP, VP, ADP). When enrollment opens, the APF staff will contact you with the name and phone numbers of the participating centers near you. If you are interested in participating for this exciting new trial, call the APF TODAY at 713.266.9617or 1.866.APF.3635 with your name, porphyria type and location to be put on the list TODAY!

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

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

3. Not Understanding the Difference Between Laziness, Leisure, and Need Prevents Care No one helps, and everyone tends to be skeptical ab...