Members & Followers

Monday, July 29, 2013

Here is an experience with Children with EPP! This has been brought to you by Rare Connect.

Bringing up 2 Children with EPP

Listed below is the brief story of our journey with EPP.
Written by Terryb, published 2 months ago.
Bringing up 2 Children with EPP
We have 3 teenage children. the two eldest have EPP and the youngest carries the gene. We first noticed problems with our two eldest on holidays to Spain when even when not in the sun and covered with factor 50, they complained of burning hands. Both my daughter and son suffered scarring and skin flaking away from their hands and feet and in one very alarming incident my daughters face blew up like a balloon and the skin across it split.
We naturally started to consult medical professionals very quickly, but it took about 3 years for the full diagnosis to come through. Once we had the diagnosis of EPP the children attended Hope Hospital in Manchester where their care has been excellent.
It has meant us making some changes to the way we live our lives to ensure that they are both protected from the sun, but over time they have learnt to manage their condition within reason. They keep well covered, in the shade and when we holiday they swim in early evening or we choose hotels with indoor pools. Though I must admit looking back at pictures of them sitting in the sun in their early years makes me shudder now that I know what it must have been doing to them, even with hats and sun cream on.
We are still looking to erradicate EPP from their lives and potentially from the lives of their children when the time comes. Seeing them struggle with burnt and cracked hands and faces has been horrible and not something I want to see again.
The conference in Luzern was a huge step forward in our understanding of Porpyhria, its short term and long term impacts and also potential treatments and it was well worth the trip and all the effort put in by everyone to organise it. So many thanks to Rocco and Jasmine.
"Remember....Research is the key to your cure!"

How Does a Heat Wave Affect the Human Body?

Excellent and informative article I had to share.
How Does a Heat Wave Affect the Human Body?
Some might like it hot, but extreme heat can overpower the human body. An expert from the CDC explains how heat kills and why fans are worthless in the face of truly high temperatures


CAN WE REALLY BEAT THE HEAT?: The human body can face a meltdown if exposed to a prolonged heat wave. Heat exhaustion and heat stroke are just some of the effects of hot weather on the body.Image:
Climate change promises to bring with it longer, hotter summers to many places on the planet. This June turned out to be the fourth-hottest month ever recorded—globally—scientists are reporting. With more heat waves on the horizon, and a big one currently sweeping much of the U.S., the risk of heat-related health problems has also been on the rise.

Heat exhaustion is a relatively common reaction to severe heat and can include symptoms such as dizziness, headache and fainting. It can usually be treated with rest, a cool environment and hydration (including refueling of electrolytes, which are necessary for muscle and other body functions). Heat stroke is more severe and requires medical attention—it is often accompanied by dry skin, a body temperature above 103 degrees Fahrenheit, confusion and sometimes unconsciousness.

Extreme heat is only blamed for an average of 688 deaths each year in the U.S.,according to the Centers for Disease Control and Prevention (CDC). But when sustained heat waves hit a region, the other health ramifications can be serious, including sunstroke and even major organ damage due to heat.

The Chicago heat wave in the summer of 1995 killed an estimated 692 people and sent at least 3,300 people to the emergency room. An observational study of some of those patients revealed that 28 percent who were diagnosed at the time with severe heat stroke had died within a year of being admitted to the hospital, and most who initially survived the high temperatures had "permanent loss of independent function," according to a 1998 study of the heat wave, published in Archives of Internal Medicine.

As temperatures linger above our bodies' own healthy internal temperature for longer periods of time, will we humans be able to take the heat? We spoke with Mike McGeehin, director of the CDC's Environmental Hazards and Health Effects Program, to find out just why—and how—a warm, sunny summer day can do us in.

How do humans cope with hot, hot weather?
The two ways we cope with heat are by perspiring and breathing.

So is it the heat or humidity that is the real killer?
The humidity is a huge factor. If you have tremendously high temperatures and high humidity, a person will be sweating but the sweat won't be drying on the skin. That’s why it's not just heat but the combination of heat and humidity that matters. That combination results in a number called the apparent temperature or "how it feels".

Obviously there are thresholds for both temperature and humidity above which we see an increase in death, and it's going to be a different temperature in Phoenix than it's going to be in Chicago.

The other major factor in terms of temperature that causes both mortality and morbidity is the temperature that it falls to in the evening. If the temperature remains elevated overnight, that's when we see the increase in deaths. The body becomes overwhelmed because it doesn't get the respite that it needs.

What kind of impact does extreme, sustained heat have on the human body?

The systems in the human body that enable it to adapt to heat become overwhelmed. When a person is exposed to heat for a very long time, the first thing that shuts down is the ability to sweat. We know that when perspiration is dried by the air there is a cooling effect on the body. Once a person stops perspiring, in very short order a person can move from heat exhaustion to heat stroke.

What happens in the transition from heat exhaustion to heat stroke?

It begins with perspiring profusely, and when that shuts down, the body becomes very hot. Eventually that begins to affect the brain, and that's when people begin to get confused and can lose consciousness.

The analogy we use is if you're driving a car and you notice that the temperature light comes on, what's happening is the cooling system of the car is becoming overwhelmed. If you turn off the car and let it cool eventually you can start driving again. But if you continue to drive the car, the problem goes beyond the cooling system to affect the engine, and eventually the car will stop.

What other areas of the body does this extreme overheating affect?
As the body temperature increases very rapidly, the central nervous system and circulatory system are impacted.

In places where there have been prolonged heat exposures, there is probably a broad impact on many organ systems. From heat waves that have been studied, like in Chicago, there are increases in emergency department visits and hospital stays for medical crises that are not normally associated with heat, such as kidney problems.

But it really hasn't been studied very much. One of the reasons for that is the main focus of the studies has been on mortality from heat waves, and there hasn't been that much focus on morbidity. That would take looking at people who are hospitalized from heat exhaustion or heat stroke and following them into the future. 

Before someone gets full-blow heat stroke, what are the body's early reactions to excessive heat?
Heat rash and muscle cramps are early signs of people being overwhelmed by heat. If those aren't dealt with, it can lead to more severe symptoms. 

Cramping of muscles can be for a number of different issues, including electrolytes not getting to the muscles. 

People should be aware that their skin turning red and dry are indicators that heat is impacting them. 

Who is the most vulnerable to extended high temperatures? 
We know the risk factors for dying from heat are urban dwellers who are elderly, isolated and don't have access to air conditioning. Obese people are at increased risk as are people on certain medications. And people who are exercising or working in the heat, who don't meet those criteria, can be at risk. 

What medications can make the body more susceptible to extreme heat? 

In the study from the 1995 Chicago heat wave, we found that diuretics for high blood pressure were some that did, and beta blockers—a number of studies showed that people taking them could be at increased risk. 

There are some studies that have shown that certain mental health medications may impact a person's ability to deal with the heat. But that's a difficult one to get at. When you look at the number of people who die in a heat wave and the number of people who are taking those medications, the numbers can get pretty small pretty quickly. 

What's the hottest temperature a healthy human can tolerate?

We don't know that—no one knows that. There are different humans, different humidities, different types of temperature. 

Have we not evolved to cope with super hot weather? 

Certainly society has evolved in dealing with the heat—and that has been in the development of air conditioners. The number-one factor that ameliorates death from heat is access to air conditioning. 

And I've read that fans don't work to prevent overheating in really hot temperatures…
Not only does it not work, it actually makes it worse. We compare it to a convection oven. By blowing hot air on a person, it heats them up rather than cools them down.

Are modern humans neglecting to do something our ancestors did to survive the heat?
I think it's always been a problem. There's history over hundreds of years of people dying of heat. Philadelphia in 1776 had a major heat wave that caused deaths. 

We're also living to older ages, and we're more urban now than we have been in the history of the human species. That intense crowding can combine with the heat island effect in big cities. Our elderly people are also more isolated than they have been in the past, so those factors can play a part, too. 

The IPCC, the Intergovernmental Panel on Climate Change, the thing that they are most comfortable in predicting, that the science is most solid for, is the increase in many parts of the world in the duration and intensity of heat waves.


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

Sunday, July 28, 2013

APF Announcement

Everyone!!!! **** The T-shirts are almost all gone here is what I have left in sizes:
XL-1XL= 12, L-1, M-12, S-7, so if you would like to place an order leave your order @ porphyriaorders@gmail.com along with method of payment and full mailing address. We accept Visa, MC, Money order and personal check.
http://www.porphyriafoundation.com/news/APF-T-Shirts
"Remember....Research is the key to your cure!"

Friday, July 26, 2013

Fruits & Veggies Then & Now

I found this really interesting.  I am a big fan of fruits and veggies.  I encourage you to read this over.

Are Fruits and Vegetables Less Nutritious Today?

Studies suggest that today's fruits and vegetables might be missing some key nutrients. Find out why, and discover shopping and cooking techniques that preserve nutritional value.

Medically reviewed by Lindsey Marcellin, MD, MPH
A number of studies have explored the phenomenon of declining nutrients in fruits and vegetables, but the one that garnered the most media attention was led by Donald R. Davis, PhD, at theUniversity of Texas in Austin, and was published in HortScience. Among Davis’s findings, one of the most consistent was that a higher yield of crops — in other words, more crops grown in a given space — almost always resulted in lower nutrient levels in the fruits and vegetables. What’s more, the median mineral declines among a variety of fruits and vegetables could be fairly significant, ranging from 5 to 40 percent, with similar declines in vitamins and protein levels.
Higher yield is one reason behind the decline, but severalnutrition experts say it's not the only one. “The soil itself has been over-harvested, meaning that over years of use and turnover of soil, it becomes depleted in nutrition,” says Michael Wald, MD, an integrated medicine specialist in Mount Kisco, N.Y. “All crops growing upon depleted soil must therefore be depleted in nutritional content.”
Cherie Calbom, MS, a clinical nutritionist and author of The Juice Lady's Living Foods Revolution, sees it as a bigger problem that extends to many aspects of modern farming. “Our poor farming practices are leading to sick plants, depleted soil, and a need to use higher and higher doses of pesticides and herbicides to ward off what healthy plants would naturally ward off,” she says. “We are heading toward a dust bowl in many parts of the country if nothing changes.”
Despite these concerns, Janet Brill, PhD, RD, a nutritionist and author of Cholesterol Down, it’s still critically important to eat lots and lots of fruits and vegetables, and these developments shouldn’t discourage you from doing just that. “People should be concerned about one area of fruits and vegetables and one area only: to eat lots more of them each day, cooked and raw,” she says. “After we have solved that problem [of consumption], then we can move on to any nutrition concerns about growing them.”
5 Ways to Get the Most Out of Your Fruits and Veggies
There are still many steps you can take to ensure a healthy nutrient punch every time you include fruits and vegetables in your diet.
Go with locally grown. The key to getting more nutrients is eating food that spends less time traveling from the field to your table. The way to accomplish that goal is with locally grown produce, either from your own garden or from a local farmer’s market. “Buy fresh, whole, and locally grown seasonal produce,” Brill suggests. “Try to purchase produce with the least amount of time from farm to table, as vitamins and minerals are lost over time as well as with cooking and handling.”
Choose frozen. Your natural instinct when eating produce is to think that fresh is always better than frozen. But Brill says that this isn’t necessarily the case. “Sometimes the veggies frozen right after harvest have retained more nutrients than those ‘fresh’ veggies that have taken forever to get to your plate,” she explains.
Don’t judge a book by its cover. Big, shiny fruits and vegetables sure look good and grab your attention in the supermarket, but just because they’re beautiful doesn’t mean they’re better for you. For example, organic apples may be smaller and not quite as pretty, but their pesticide levels are likely to be lower.
Keep them rough. When it comes time to prepare those fruits and vegetables for eating, bigger, rougher pieces of produce may have the nutritional edge over finely chopped and sliced options. “Keep chopping to a minimum,” Brill advises. “The greater the exposure of the fruit or vegetable to air, the greater the loss of nutrients.”
Minimize cooking time. Though there are some exceptions (the lycopene in tomatoes, for example), the less most fruits and vegetables are cooked, the more nutrients they retain. So eat your fruits and vegetables raw whenever possible. When you do cook them, keep the cooking time to a minimum and avoid too much contact with water. “Cooking methods that are quick, with a minimum amount of liquid, will help to preserve nutrients,” Brill says. “Steaming, blanching, and stir-frying are all great ways to cook vegetables quickly and retain valuable nutrients. Keep veggies crisp — never overcook or boil in water until soggy.”

It may take a bit more effort to find fruits and vegetables as nutrient-rich as they were 50 years ago, but with more local farm stands cropping up, seasonal choices are getting easier to find and are certainly more delicious.

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

Wednesday, July 24, 2013

Big News Reports from the American Porphyria Foundation



The APF Website has Received a Makeover....


We are pleased to announce the release of the Updated APF website.

Some of the new sections Include:
  • New Rotating Members Photo's and Quotes Gallery on the Home Page.
  •  New "Porphyria Awareness and Fundraising Events" section with both Past and Present Events.
  •  New informative Videos on the Home Page and You Tube videos on a variety of subjects.
  •  New links to special educational sections
  •  And a host of other informative resources
  •  An enhanced Image Gallery. 
  •  Additional Member and Panhematin stories.  
  •  Previews of the video, Porphyria Live and much more  

Take a look and we hope you all benefit from the vast resource of Information.  Note the medical information on the APF website was written by Porphyria Experts:    http://porphyriafoundation.com. .  

Watch the website for more exciting new features which will be added over the next month, including easy access to Desiree's book, Porphyria , A Lyon's Share of Trouble and an Art Gallery of our members talent. 

Please submit your own stories, paintings, poetry, and videos or You Tube videos.  The APF is your foundation.  We want to add more about you.  Contact Yvette at the APF at porphyrus@aol.com or call 866.apf.3635.


NEW Caretaker Support Forum....

Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forum for spouses or partners who help their loved one cope with porphyria.  To read more about Warrens story as a caretaker for a loved one with AIP view here.

The Caregiver Support Group strives to provide a forum to ask questions, share advice, experiences and provide a sounding board for those going through similar circumstances.

Our goal is to eventually provide multiple resources to assist caregivers in their day-to-day lives. This is your community and your input will help shape this service. Whether you are a spouse, partner, relative or friend of a porphyria patient, we want to hear from you. Contact the American Porphyria Foundation or email us at apfcaregiver@aol.com for more information.

We respectfully request that only caregivers of patients in the active process of diagnosis or with a diagnosis of a porphyria participate in this group.


Official APF T-Shirts are Still Available....

Thank you to all of you who have already purchased their APF T-Shirts and Porphyria Live DVD's.  The interest you all have shown is very exciting for us. They are going fast. Order yours today! For instructions on how to order yours view here.


New Safe/Unsafe Drug List Mobile Web App....

Screenshot_mobile web app safe unsafe list



We sincerely appreciate the hard work of APF member, Mr. Nicholas Frias , who designed a fantastic Mobile Web App for the Safe/Unsafe Drug List for the Acute Porphyrias.  He combined the APF list and the European and South African lists to create an easy to search list. Read more...


  


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

Tuesday, July 23, 2013

Summer vacation a personal experience from Natalia Nikova

It's summer time have you taken a vacation yet? Please read the reminders off a new personal experience from Natalia Nikova

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

Beware of Mountains
My name is Natalia Nikova.  I was born in Russia in St. Petersburg.  I have AIP.
I went through horrible surgeries and sufferings in Russia before I was properly diagnosed.  That happened when I was between 25 and 30 years old.
After that I was receiving capsules of Adenil through the Red Cross for about four years and injecting myself two times a day.  My recovery was very slow but at the age of 39 I started to feel better and I was able to immigrate to the USA with my daughter and my mother.
I managed to change my profession from Choral conductor to a computer programmer to support my family and my porphyria's symptoms almost disappeared. Now I am 63 years old and in August 2004 all of a sudden I had a reminder. I and my husband went to Peru.  I got immediately sick in Cusco from the high altitude but the altitude sickness was greatly aggravated by porphyria. In addition to a headache and shortness of breath I had nausea, high fever, high blood pressure and grazing pain in my stomach. In fact I became so sick that we had to change our entire itinerary and move to lower regions in Peru.  That was not too much fun because I am a bird watcher I was looking forward to go to Colca Canyon to see Andean Condor.  Even after we returned from Peru I was sick for two weeks with general weakness.
I hope that sharing this story will help some people in planning their vacation.
 "Remember....Research is the key to your cure!"

FDA Warns of Sunscreen Spray's Flammability Risk

FDA Warns of Sunscreen Spray's Flammability Risk


SUNDAY, July 21 (HealthDay News) -- Certain sunscreen sprays worn close to an open flame may pose a risk of catching fire, the U.S. Food and Drug Administration warns.
The agency said it knows of five incidents in which people wearing sunscreen spray near sources of flame suffered significant burns that required medical treatment. The products involved in these incidents were recalled and should no longer be on store shelves.
However, many other sunscreen spray products contain flammable ingredients, commonly alcohol. The same is true for some other spray products -- including insect repellants and hairsprays -- and even some non-spray sunscreens, the FDA said.
"Based on this information, we recommend that after you have applied a sunscreen spray labeled as flammable, you consider avoiding being near an open flame, sparks or an ignition source," Dr. Narayan Nair, a lead medical officer at the FDA, said in an agency news release.
Many flammable products have a label warning against their use near an open flame. Never apply a product labeled as flammable when you are near a source of flame.
However, the five incidents reported to the FDA occurred after the sunscreen spray had been applied. The sources of flame included lighting a cigarette, standing too close to a lit citronella candle, approaching a barbecue grill and doing welding.
These incidents indicate that catching fire is possible even if you believe you have waited long enough for the sunscreen to dry and your skin feels dry, the FDA said.
"Remember....Research is the key to your cure!"

Monday, July 22, 2013

New shipment arrived today! APF-T-shirts & APF videos selling out get yours today.

Back by popular demand!  New shipment in. These will not last long.  They are going quick.  Did you get your video & T-shirts yet?  Support the APF by making your purchase today!

We are pleased to announce that the official APF T-Shirts have arrived!





Our hope for the T-shirts is that you all will buy and wear them to help promote and raise questions about Porphyria and to raise funds for the Dr. Packets, pain Management docs, among many other publications we make available at no cost.
Amy Chapman is heading up the T-shirt project. There are also some copies of Porphyria Live for sale. For information on how to order the T-Shirts and/or the Porphyria Live Video see below.

Porphyria Live DVD Introduction



You can order a T-shirt and/or Porphyria Live DVD by sending an email order toporphyriaorders@gmail.com
I must have name, complete address, and phone number.  Also include the Quantity of T-shirts and the size for each one. And include the quanity of the Porphyria Live Video.

To accept payment: One of two options I can accept Paypal VISA/MC only I must have full name on the card, account#, exp. date, 3 digit code on back of card CVV- 
I will accept money orders and personal checks.  You must have name/address/phone # on them. 
They can be mailed to me:
Amy Chapman
10475 Gandy BLVD N. Unit 3417
St. Petersburg FL 33702.  

*The APF will not take orders or calls about T-shirts*
Once I receive the order I will ship out your product.

All products will be shipped out Priority mail with tracking.  Each person also will receive a receipt with T-shirts.

T-shirts come in the following sizes S, M, L XL, 2xl, 3xl they are 100% cotton, heavy not thin, and very durable.  No other sizes.  

The price per T-shirts is $19.00/shirt. This covers the shirt, shipping and tracking, and priority mail.  International orders: I will have to consult first with the post office for shipping rates.
The price of the Porphyria Live DVD is $10.00 each. Shipping is included in the price.

100% of all funds received will go back to the APF


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

Thursday, July 18, 2013

APF Website received a makeover! Check it out.

The APF Website has received a makeover!
Take a look at some of our new features like the New Rotating Members Photo's and Quotes Gallery on the Home Page.

There is a new section "Porphyria Awareness and Fundraising Events" A list of Past and Present Events.

Among many other things.
Take a look and we hope you all benefit from the vast resource of Information provided and screened by Porphyria Experts.

The APF Website has received a makeover!
Take a look at some of our new features like the New Rotating Members Photo's and Quotes Gallery on the Home Page.

There is a new section "Porphyria Awareness and Fundraising Events" A list of Past and Present Events.

Videos on the Home Page, Among many other things.

Take a look and we hope you all benefit from the vast resource of Information provided and screened by Porphyria Experts.


www.porphyriafoundation.com

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


Wednesday, July 17, 2013

Living with EPP webinar

Living with EPP webinar

We'd like to invite you to a webinar: 

"Living with EPP" 

Sunday, August 11th at 20.00 CET (Barcelona time), 14.00 EST (New York) 
Enter as a Guest with your Name, no password required. Connect your headset
Mission: People living with EPP and their families come together to share their stories, realize their similarities, share their strategies, and have a virtual meeting. There will be plenty of time for discussion.
We hope you can join us on August 11! If you're on holidays, don't worry, we'll record it and post the video here afterward.
"Remember....Research is the key to your cure!"

Offical APF T-Sirts Ordering Information below. Order your TODAY.

We are pleased to announce that the official APF T-Shirts have arrived!



Our hope for the T-shirts is that you all will buy and wear them to help promote and raise questions about Porphyria and to raise funds for the Dr. Packets, pain Management docs, among many other publications we make available at no cost.
Amy Chapman is heading up the T-shirt project. There are also some copies of Porphyria Live for sale. For information on how to order the T-Shirts and/or the Porphyria Live Video see below.

Porphyria Live DVD Introduction


You can order a T-shirt and/or Porphyria Live DVD by sending an email order toporphyriaorders@gmail.com
I must have name, complete address, and phone number.  Also include the Quantity of T-shirts and the size for each one. And include the quanity of the Porphyria Live Video.

To accept payment: One of two options I can accept Paypal VISA/MC only I must have full name on the card, account#, exp. date, 3 digit code on back of card CVV- 
I will accept money orders and personal checks.  You must have name/address/phone # on them. 
They can be mailed to me:
Amy Chapman
10475 Gandy BLVD N. Unit 3417
St. Petersburg FL 33702.  

*The APF will not take orders or calls about T-shirts*
Once I receive the order I will ship out your product.

All products will be shipped out Priority mail with tracking.  Each person also will receive a receipt with T-shirts.

T-shirts come in the following sizes S, M, L XL, 2xl, 3xl they are 100% cotton, heavy not thin, and very durable.  No other sizes.  

The price per T-shirts is $19.00/shirt. This covers the shirt, shipping and tracking, and priority mail.  International orders: I will have to consult first with the post office for shipping rates.
The price of the Porphyria Live DVD is $10.00 each. Shipping is included in the price.

100% of all funds received will go back to the APF


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

Monday, July 15, 2013

Warren Hudson ~ Caretaker



Warren Hudson ~ Caretaker



Type of Porphyria: 
Acute Intermittent Porphyria (AIP)
  
Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forum for spouses or partners who help their loved one cope with porphyria.  If you would like to participate in the Caretaker group, please contact the APF for Warren's contact information.  Below is Warren’s story.

"Porphyria is a large part of my life effecting relationships and day-to-day activities.  It controls my ability to work, what kind of jobs I can take, and how I care of my family.  Porphyria cost me friendships and takes a great mental and physical toll. I am extremely afraid of the simple act of visiting new doctors. I go prepared with questions and the expectation of disappointment or rejection. The horror related to a hospitalization is something I am unable to put into words. I know my story is common for those suffering with one of the Acute Porphyrias. However, I do not have Porphyria. I am the husband and caregiver of someone with Acute Intermittent Porphyria (AIP). My experience lacks the physical pain but gives me a front row seat to hers and confronts me with an overall feeling of helplessness.​


The role of caregiver for a Porphyria patient has been largely unexplored. Obviously, the patient is everyone’s primary concern—as they should be our focus. However, a strong healthy caregiver provides better long-term support. It is all too easy for both caregiver and patient to focus on the patient. In my case, this comes with consequences. At first, both my wife and I treated AIP as something separate from our relationship and our lives. This was unrealistic and fed many disappointments for both of us when we realized the disorder could not be ignored.  We strive to understand how it is part of our lives and work together to limits its effect.  I wanted to share some experiences, provide insight and hopefully help others in my position.


My wife and I were friends since the age of fourteen, and AIP was never a topic of conversation. I vaguely remember her talking about a hospitalized cousin with extreme pain, paralysis and an undiagnosed illness. However, this was a passing conversation in our mid-teens. Fifteen years after we initially met, her AIP symptoms started. I saw my future wife get increasingly depressed and her frustration build.  Often, I was the closest person around taking the brunt of her anger and frustration. In these instances the caregiver’s role can be very lonely.


In 2003 my wife had an extremely bad attack. I ended up taking off of work for a month, sleeping on the floor next to her in the hospital and being my wife’s advocate with nurses and doctors when she was unable to speak for herself.  Over the years, this scene has replayed numerous times. I had hospital doctors tell me my wife was faking her symptoms or the pain she described was not possible. I have been called an enabler and accomplice. Despite this, I attempt to continue to advocate for my wife’s care and ensure medications are appropriate and her needs met. In extreme cases, I document everything from the time a nurse walks in the room, take pictures of allergic reactions, list medications given and what was said by whom. Every time I go through this process it causes me profound sadness.  It seems like an injustice that anyone should have to jump through these hoops to ensure medical care is adequate.  I end up feeling like an administrator rather than a husband, but I have caught too many mistakes to stop.


A few months ago I had the opportunity to have breakfast with another husband of an AIP patient. In a year I speak with doctors, healthcare providers, insurance personnel and other Porphyria patients, but rarely do I get to speak to a fellow caregiver. We shared our experiences, fears, and frustrations. The ability to just talk and listen without judgment was cathartic. In these moments, I am reminded my wife and I are not the only people dealing with these issues. No matter how bad it seems, there is someone else who has gone through something similar. Several years ago I was part of a group of patients and spouses sharing our experiences with the makers of Panhematin. I was struck with how familiar each patient’s story sounded. Away from the group, a few spouses and I shared some of the burdens AIP placed on each of our relationships. These too sounded very familiar.


Every relationship has stresses, but AIP presents some that are new and amplifies others. One of my biggest problems has been its effect on my career.  I was offered a position with a company in the United Arab Emirates, and had to turn it down because their Ministry of Health would not allow my wife into the country due to medications she might require.  AIP affected our ability to travel to visit friends or take vacations. The risk my wife would become ill and need treatment while on the road is ever-present.  We lost friends who felt they were “blown off” because we did not travel to see them. Some of our friends did not understand why, during periods when my wife was extremely ill, we failed to call or write.  Even some family withdrew because they simply did not understand our limitations.


I think one my biggest problems, and generally Porphyria caregivers, is that we do not talk enough to others in a similar position.  We tend to hold back, bottle up our emotions, focus on our loved ones and in my case, internalize my frustrations and fears. This can be isolating and unhealthy. I took my personal concerns, pains or illnesses and measured them up against what my wife experienced.  In comparison, my problems seemed petty.  If I got sick, I treated my illness like something I should push through or shrug off. If I physically could not go to work or do something for my wife I felt guilty because I knew she got out and did things when a day before she was unable to walk.  My focus on caring for my wife and not caring for myself affected my health. I gained a large amount of weight and became increasingly depressed.

Even when those closest to me were concerned and wanted to talk, I held back details because it felt like I was betraying my wife by discussing her AIP and how it affected me.  I am not suggesting these are common experiences of all caregivers, but as a patient, realize these people by your sides are not passive observers but right there in the trenches with you.  It is very easy for those of us in the caregiver’s role to become immersed in the problems of our loved one and neglect ourselves.


The irony of putting someone else’s needs ahead of your own is that both people suffer.  It is critical that those of us in the caregiver role take the time to ensure our own needs are being met and that we do not neglect the most important person, ourselves. In order for our spouses, family, friends or loved ones to get the care they need it is imperative that we take care of ourselves both mentally and physically. Reach out to other caregivers if you need advice or a sympathetic ear. Get involved in things that bring you joy. These have been hard lessons for me to learn, and something I struggle with on a daily basis. If you remember anything else, please know neither the patient nor the caregiver is alone in this journey."
  • "Remember....Research is the key to your cure!"

Wednesday, July 10, 2013

How to Become a Very Healthy Person-Total Body, Mind, Makeover You deserve it!

What great suggestions! Total Body, Mind, Makeover You deserve it!  Feel Well Everyone


Want to become a healthier person? It's all about making gradual changes. Following the tips in this article offer several benefits for you: lower risk of several cancers and diseases, a possibly leaner frame, and the chance to live a long and happy life.


  1. 1
    Get lots of sleep. In order to maintain a healthy body, you'll need 8-10 hours of sleep every day. This keeps you awake and alert, so you don't have to drink caffeine and sugar-loaded energy drinks. If you are a kid and have early school times, go to sleep earlier on school nights.


  2. 2
    Laugh and smile! Smiling a lot makes your face look younger and it feels great. If you laugh a lot, it has been scientifically proven to keep you healthier.


  3. 3
    Do nothing. Staying in a dark, quiet place without having any stressful thoughts for about ten minutes will leave you feeling refreshed. If you just relax, you will feel better and probably keep feeling good through the day. Just do this a couple of times a day.


  4. 4
    Eat more fruits and vegetables. Fruits and vegetables are an essential part of a healthy diet. Try to get at least 5-9 servings a day.


  5. 5
    Drink water! Good old H2O is key in making you run throughout the day. Try drinking 8 eight-ounce glasses of water each day. It helps you re-energize and keep going. Not drinking enough fresh water leads to acne, headaches, and even dehydration. Do this, and you'll stay in good condition.


  6. 6
    Stretch! It feels great! From when you wake up in the morning, to your gym class, this easy form of muscle exercise warms you up and makes you more flexible. If you continuously stretch each day, you will end up being really flexible and nimble. It keeps you running longer and gives you strength.


  7. 7
    Run and jog! This doesn't necessarily mean run five miles every morning, but jogging or running for about 10 minutes at an easy pace definitely will keep you in shape. Try jogging for about 10 minutes 2 times a week. It will keep your muscles strong and fit every day. Don't ever run for an hour and then suddenly stop and sit on the couch for another hour. This will give you terrible cramps and will make it so it hurts to walk the next day. Slowly kick down the pace to a walk, and take deep breaths. Running will get you that A in gym class, trust me!


  8. 8
    Challenge yourself. If you got 10 push-ups as your maximum, try going for 12! Little challenges like this keep your body nice and fit.


  9. 9
    Do something you love. Play with a pet, go swimming, or jump on a trampoline! Doing things you love to do keep you in a good mood, and make you happier. If you had a bad day at school, ride a bike and take out your anger. Not only is this fun, but it lets you be yourself for awhile. Try it!


  10. 10
    Feel good about yourself! There is always going to be someone in the room who does at least one thing better than you, so don't compare yourself to other people! Find things you are good at, and use your talents!


  11. 11
    Accomplish something. This will make you feel victorious! Performing a song or using your talents to amaze someone else makes you feel great!


  12. 12
    Get a little exercise everyday. This will not only make you feel better, and make you look better, but help you to get through the day.


  13. 13
    Be cool - Don't take things too seriously! Be laid-back and open minded, explore new things, e.g. new cultures.


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