Sunday, April 23, 2017

#NPAW2017 Marlene Brezee & AIP

Marlene Brezee


Marlene BrezeeIt's hard to believe it's been thirty years since my diagnosis. I thought life as I had known it was over. I had a loving husband, two wonderful children and nothing really bad had ever happened to me. I found out at the age of thirty that I was going to have another child. Everything went fairly well up until about five months into the pregnancy. I began to have abdominal pains. The pain would come and go. I would go into the hospital, stay a while, be diagnosed with false labor and given medication. In and out- In and out. The pain, however, became increasingly worse and was accompanied by nausea and vomiting. I also had a strange thing start happening. My urine turned tea colored.
Meanwhile, back into the hospital they were trying to discover what was wrong and gave me more medication, another consult with another doctor, and again the diagnosis of false labor.
My doctor decided to try an old remedy of using an alcohol I.V. to stop the false labor; I was now in a lot of distress and my moaning and groaning could be heard outside of my room. The other patients began asking what was wrong with that woman? Things then went from bad to worse, and I was sent by ambulance to the University Of Michigan Hospital in Ann Arbor. It was a frightening time in my life. It's very scary when you are so very ill, and the doctors can't find out why. My family and friends were praying so hard for me. My husband was such a comfort and rock when with me but told me later how he had sat out in the parking lot crying and praying when things seemed so dark.
God's timing is always perfect. It doesn't, however, mean that He answers as quickly as we would like. At the U of M Hospital they immediately took all medications away from me, including the pain meds. I now felt desperate. I begged them and my family to have them do surgery to see what was wrong. I knew if they would just go in and look, they would see the problem. The doctors had discussed a possible bowel problem but they really didn't know. As I say, God's timing was prefect and oh so merciful. In a few hours I was to have an exploratory laparoscope. At five months my baby would be at great risk.
How I remember the words from the two doctors standing by me as they looked down at my catheter. Those few words would change my life. "I don't like the color of the urine; The test is simple enough, do it;" The test came back positive for porphobilinogen and subsequent tests were positive for porphobilinogen. All surgery was now stopped and the diagnosis of Acute Intermittent Porphyria was given. My local doctor told me later, I was so close. I kept thinking, "What causes abdominal pain and red urine? " ; He couldn't remember, but you see, God knew the timing wasn't right. Perhaps we all had more to learn. As I was to find out later, Porphyria can be called the "little Imitator," as it can mimic so many other conditions...The doctors realized that the very meds that had been given to help me were in fact making my symptoms worse.
My life as I had known it thirty years ago was not over for me. The baby, even though he was born two months prematurely, is now six feet three inches tall, married and in full time Christian work. I have told him how God protected him in his mother’s womb. At times I tend to worry over him, as I do with all my children, but I like to remind myself that God loves him more than I ever could.
I cannot say that I have never been bothered with Porphyria again, but never for that long. I have had some episodes of severe nausea and vomiting especially after surgery or colonoscopies, and I did have a couple episodes two or three years ago that were suspect. The one started out with my head feeling whoozy, and I started to feel nauseous. I have migraine headaches, so I wasn't sure what was happening. I went to get up and walk and was so tired I sat right on the floor for awhile. I was able to get into the car but while getting to the doctor's office my legs and arms felt very strange and very weak. The only releif I could get was to hang my head as close to the car floor as I could get it. By the time I got to the doctor's office, I was so weak that the doctor described it as flacid. I was sent by ambulance from there to the ER. I received one IV glucose push in the doctor's office by the paramedic and one or two more at the hospital. I responded very well. Late that evening they started a 24 hour urine test.
For whatever reason the test did not show positive. This is still a puzzle to me. I had been taking a drug that my doctor felt that may have been the reason I got into trouble. She says she won't ever prescribe another similar one for me.
At age 61 looking back to the day of diagnosis, I realize I have done very well. When I feel good, which is most of the time, I feel so good that it is actually hard to imagine being sick.

Saturday, April 22, 2017

National Porphyria Awareness Week: April 22 - 29, 2017


National Porphyria Awareness Week: April 22 - 29, 2017

Rita Ladner set up a table at her local pharmacy (Boone's Pharmacy) to pass out porphyria brochures and porphyria fact sheets.  She also educated those with questions about this rare disease.  She had one lady come up to her who had a friend recently pass away with porphyria.  She had not heard of it again until she had spoken to Rita.  She sends her inspiration for YOU to do MORE!  Way to go, Rita!



Think about what you can do to heighten awareness!

National Porphyria Awareness Week provides each of YOU with the opportunity to enhance porphyria awareness in your local and medical communities. 

The APF can help you accomplish this goal by providing materials:
  • Porphyria Brochures
  • A Porphyria Live DVD
  • Fact sheets
  • A PowerPoint Presentation
  • Information for Grand Rounds
  • Ideas to set up Medical Seminars
  • Ideas to exhibit at a Health Fair
  • Information to gain press
  • Doctor packets sent to your doctors
  • Press Releases

Contact the APF today 1.866.APF.3635!

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

Patient Education Meeting on the beautiful emerald coast in Santa Rosa Beach, Florida on Wednesday, May 10, 2017. You are invited to attend!



MARK YOUR CALENDARS!

The American Porphyria Foundation will be hosting a Patient Education
Meeting on the beautiful emerald coast in Santa Rosa Beach, Florida on Wednesday, May 10, 2017. You are invited to attend!

Family and Friends are also welcome to come. See the invite below.













Are you interested in hosting a patient education meeting in your area? Call the APF TODAY to find out more information!
1.866.APF.3635 or 713.266.9617

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

Friday, April 21, 2017

National Porphyria Awareness Week: April 22 - 29, 2017


NPAW 2017


Let's Raise Porphyria Awareness!

National Porphyria Awareness Week: April 22 - 29, 2017

Jake Velasquez will be hosting an APF fundraiser to raise awareness for porphyria in the New York City area. Stay tuned for details!
Candace Colbert hand distributed a number of brochures and EPP fact sheets to local hospitals and physician clinics in her area.

Think about what you can do to heighten awareness!

National Porphyria Awareness Week provides each of YOU with the opportunity to enhance porphyria awareness in your local and medical communities. 

The APF can help you accomplish this goal by providing materials:
  • Porphyria Brochures
  • A Porphyria Live DVD
  • Fact sheets
  • A PowerPoint Presentation
  • Information for Grand Rounds
  • Ideas to set up Medical Seminars
  • Ideas to exhibit at a Health Fair
  • Information to gain press
  • Doctor packets sent to your doctors
  • Press Releases

Contact the APF today to get involved at 1.866.APF.3635 !

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

Wednesday, April 19, 2017

Story~ ER DR Who Told Me I Was "Wasting Time and Resources"


To the ER Doctor Who Told Me I Was 'Wasting Time and Resources,' Thank You!2


Dear Emergency Room Doctor,
Thank you for being such a jerk to me!
You may not have realized when you said I was “wasting emergency department time and resources” over and over that you changed me, but you did. While you may have thought I had “just a headache” and was “taking up space for patients in the waiting area who needed to be seen,” you were wrong.
See, I heard how it started. It’s just a curtain after all. I heard the triage nurse slam my file down on the desk and say the person in my room was here for a headache. I know how it must have seemed when you had a full ER for the entire three hours I sat out there waiting to be seen. You didn’t get it because you didn’t listen.
Listening is a key part of2 your job. It’s a part you failed at that day. You and the triage nurse decided I was there for drugs. I get that. I’m sure you get that a lot. But you missed that I had been in the hospital for three days and was just released a few days prior. You missed that I said the hospital neurologist on call had already called to say I was coming in and that the hospitalist team was ready to admit me. You missed the very key point when I talked… it wasn’t a headache, it was head pain.
The head pain was so bad, cracking my own head open by banging it on the floor seemed like it would be less painful. It was so bad that I had triple vision and could barely sign my name to paperwork. It was so bad, I passed out. It was so bad that I had a bag prepped and was willing to come back to the hospital after just leaving. But you missed all of that because you didn’t listen.
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You may have had a bad day or had a lot of people who could have been seen elsewhere, but saying “every doctor tells their patient to come to emergency, that doesn’t mean you need to” wasn’t helpful. If my doctor tells me to go to the ER, what am I supposed to do? You have the medical degrees.
I ended up leaving that day against medical advice (AMA). Why AMA? Because the resident said I could die by morning if I wasn’t evaluated more, and you wouldn’t sign off. You told me over and over I shouldn’t be there but wouldn’t discharge me. So I left because dying at home on my bathroom floor was a more acceptable option than dealing with you telling me how wrong I was for five more minutes. Does that make you feel like a better, doctor?
I get that I have a rare disease. I get that you don’t come across it much. But why do you get to decide I am wrong when other people who would be taking care of me once I’m admitted have said I need to be there?
You may have been horrible to me, but you made me a stronger patient. When I returned a few days later and was admitted for the treatment I didn’t get when you were in charge of me, I was strong enough to say no when they wanted to discharge me. I knew I wasn’t well enough and they hadn’t found the cause, so I made them transfer me.
While you thought I was being over dramatic, which clouded my treatment, I made them transfer me to a hospital where they did find another problem — a problem that still may have been hiding today if you hadn’t broken me down so much that I started saying the white coat does not mean the person has common sense.
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You broke me to a place where I no longer take a doctor’s word without finding out myself. While it may be slow progress in treatments, you taught me I can’t totally trust my care to a doctor without learning myself because there will always people like you around. There will always be a doctor who makes up his or her mind before even seeing the patient. There will always that possibility that I will run into someone exactly like you, and I will no longer accept it.
You may have broken me to tears once, but you taught me I need to trust myself before I trust the white coat. (But you will still never treat me alone because I have zero trust in you.)
Thank you!


#NPAW 2017 Cookie & Cake Anyone?




Cookie Cake anyone?
The Fleegel Family have participated in T.V. shows, FDA presentations and even decorated their very own porphyria cookie cake. YUM!!
There are all sorts of ways to enhance awareness in your community!
 
What are you going to do to raise porphyria awareness? We want YOU to get involved.
The APF will help you accomplish your own activity by providing:
Porphyria Brochures,
Porphyria fact sheets,
Porphyria Live DVDs,
Information to gain media attention,
PowerPoint presentations and MUCH MORE!
Contact the APF TODAY at 1.866.APF.3635 or 713.266.9617


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

Monday, April 17, 2017

NPAW 2017 Merchandise Has Arrived! Place your order 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, Official APF T-shirts, Baseball caps & Wristbands
*The APF will not take orders or calls about T-shirts*

You can order a T-shirt and/or Porphyria Live DVD/Wristbands by sending an email order to:amy.apf@gmail.com.
Please send an email and include the following:  Full Name, complete mailing address, phone number.
Order: Please send your items that you would like to order by quantity and then size for each T-shirt.  For privacy purposes, please send in the email either the Visa/MC Number Expiry Date and CVV code on the back of your card.  IF you prefer I can contact you by phone.  NO CC info is kept on file!
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/DVD.
T-shirts come in the following sizes S, M, L, XL, XL, XL they are 100% cotton, we now have Youth sizes S, M, L. Heavy not thin fabric and very durable (EPP, XLP, CEP, HCP, VP) The cost for the New T-shirts are 20.00 each Adult or Youth
This covers the shirt, shipping and tracking, and priority mail for US orders. 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 for US orders. International orders: I will have to consult first with the post office for shipping rates.

Wristbands with imprinted APF logo~ on them. Available Purple.  $3.00 each or 2 for $6.00, this includes shipping & tracking. NO LATEX


Baseball caps~ APF Logo 10.00 each (adjustable strap to fit all)
Car or Fridge Magnet~ APF Logo 8.00 each
100% of all funds received will go back to the APF!

Click on the link here: http://www.porphyriafoundation.com/content/official-apf-t-shirts-have-arrived

#NPAW2017 Marlene Brezee & AIP

Marlene Brezee It's hard to believe it's been thirty years since my diagnosis. I thought life as I had known it was over. I h...