Thursday, November 15, 2018

Michelle Bridges AIP

I spent my whole life with unexplained symptoms. Sometimes my legs would give out, and I would have back pain, abdominal pain, slurred speech, difficulties walking and so forth. When I was 16, doctors found a mass in my brain. After removing what they could, all my health problems were blamed on “post surgical changes.”
michellebridges.jpgIn 2005, the doctors began to wonder about other causes. I was sent to see a Gastroenteritis  and diagnosed with pancreatitis. But there was no explanation for my abdominal pains that would come out of nowhere and then disappear. The doctors decided that is was due to a problem with my digestion and cut part of my bile duct. However, I landed back in the hospital with pancreatitis. Then nothing happened for about eight months.  
At the end of July 2006, I began to have problems again. They put me on Reglan with the intention of running more tests and after about a week, I woke up feeling bizarre. I was in a haze and unable to function. I had called a friend and asked her to take me to the hospital. I turned to walk down the hall towards my bedroom so I could lie down, but my legs would not move. I remember standing there thinking “you bend the knee and extend the leg.” By the time I had dragged myself down the hall, my arms wouldn't cooperate and I fell over.
When the paramedics got the house I swear I asked if I was having a stroke. My son says I just lay there with my tongue hanging out, in and out of consciousness and seizure activity.  I don't remember. The ER released me to my husband with the diagnosis “allergic reaction.” The following day I could not speak. Again, I went to the ER, but this time it was to a different hospital, one covered through our insurance. The doctor told my husband I was being over-medicated, and then a student at the hospital noticed the color of my urine and suggested to the doctor that my condition might be porphyria. She was correct!
I don't remember anything from the end of 2006 to 2008. Treatment for my symptoms made some things worse. I had been active in my church and home schooled other people’s children as well as my own, but I had to stop educating others and withdrew from some activities at church.
We have had a hard time finding doctors who will treat me. This disease is rare and doctors aren't experienced with it. With my new oncologist’s gentle touch and the support of the staff at our new hospital, I have become more active. I am not spending as much time in the hospital, and I still home school my children, write curriculum and resource guides, and do crafts for craft fairs and whatever else I can to support the church and help others. I do all of these activities from my bed because I am too weak and have too much pain to leave the bedroom for long stretches and I get sick so easily. But I do like to have some level of activity in my life and so I try to contribute where I can while being careful of my health.

Wednesday, November 7, 2018

Porphyria Post


Porphyria Post



Last Day to Vote!

Tomorrow is the last day to capture votes for your furry friends! We look forward to sharing the results with our community.

If you haven't already done so, please go to the APF website to see everyone's submissions!

Make sure that you see your share this link and your individual voting pages with your family and friends.

The final 12-month wall calendar will feature your wonderful animals, porphyria facts, tips, and important dates. Voting for the top slots will be held online and will benefit our critical Protect the Future program.


Here’s how it works:





To Vote:
·    ALL photo entries will be included somewhere in the calendar, though the “top dogs” will be featured on the cover and in each month!
·    Starting October 23rd - Your pet’s photo will be posted on the APF website for all to see. You’ll be able to share the link with family and friends to encourage a vote! Anyone can participate with a $1+ donation per vote.

Important Dates:

·    Voting: October 23-November 8
·    Calendars ready for sale and shipping on November 25th!


Please contact Autumnlee at the APF office with any questions at: autumnlee@porphyriafoundation.org or call (301) 347-7166.

GOOD LUCK TO EVERYONE and HAVE FUN!



EPP Clinical Trials - NEED PARTICIPANTS
Are you ready to be a medical hero? A new clinical trial with an oral investigational drug intended to reduce phototoxicity in people living with EPP has begun. Don’t delay!

Pharmaceutical company: Mitsubishi Tanabe
Length on treatment: 16 weeks
Treatment: Oral (pills)
Number of appointments: 7-9 
Arrangements: Includes Travel/hotel/food
Stipend: Each participant will receive a stipend
Locations: New York City, NY/Winston-Salem, NC/Miami, FL/Galveston, TX/Salt Lake City, UT/San Francisco, CA 
How many participants do we need: 102!!!

Please contact the APF at 1.866.APF.3635 if you are interested in participating.

"Remember...Research is the key to YOUR cure!"
Each Step Toward Finding an Effective Treatment is Important!

Website Update!

You are now able to access the new website from any browser and on any device at www.porphyriafoundation.org

Thank you to our members, industry partners, and our brilliant physicians for making this update possible!

RSVP TODAY!
Patient Education and Support Meetings coming your way. Contact the APF today to RSVP! We look forward to seeing you there.

Patient Education and Support Meeting - San Francisco

LOCATION
UCSF Medical Center | 505 Parnassus Ave.| Room: S-157| San Francisco, CA 94143
DATE AND TIME
11/11/18 5:30pm - 11/11/18 7:00pm
Seating is limited. Please RSVP Today!!



Patient Education and Support Meeting - San Diego

LOCATION
Double Tree Hotel - San Diego - Hotel Circle | 1515 Hotel Circle South | San Diego, CA 92108 |
DATE AND TIME
11/11/18 5:30pm - 11/11/18 7:00pm
Room: SOLANA | Please RSVP Today! Please note that there will be a Porphyria Specialist on site. We look forward to seeing you there!






Get Involved




Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com

American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org

STAY CONNECTED


"Remember....Research is the Key to Your Cure!"

Wednesday, October 31, 2018

Porphyria Post ~ BRAND NEW WEBSITE TOMORROW!~



Porphyria Post


BRAND NEW WEBSITE TOMORROW!



We are excited to announce that we will launch our newly updated APF website TOMORROW. It is optimized to offer the patient community and healthcare professionals easy access to critical content - written by renowned experts - on all of the porphyrias.

On Thursday, November 1, 2018 you will be able to access the new website from any browser and on any device at

Thank you to our members, industry partners, and our brilliant physicians for making this update possible!

Mobile view of the New APF Homepage!




Pet Calendar Update
CALENDAR UPDATE: We are a week into voting and have seen an outstanding response! There is still a week left so remember to vote for your favorite pet picture and show your support of the APF. You can visit the APF website and see all of our amazing entries to pick who you want to see on the cover of the 2019 APF Pet Calendar! All photos will be included in the calendar though. Happy voting! 

Important Dates:

Voting: October 23rd - November 8th
Calendars ready for sale and shipping on November 25th!

Link to entries on APF Website: APF Website Contest Page


AMAZON SMILE
Starting your holiday shopping? Many of you purchase numerous items from Amazon. Did you know that your you can support the APF through the AmazonSmile program! Amazon donates 0.5% of the price of your eligible AmazonSmile purchases to the charitable organization of your choice.

Please make the APF your choice of a charitable donation. Support porphyria while shopping!

Note, this program to provide donations to the APF will ONLY be available to shoppers who visit Amazon via a special web address, namely, www.smile.amazon.com instead of the normal www.amazon.com homepage.

It is easy and free! AmazonSmile is the same Amazon you know - same products, same prices, same service.

Thank you for supporting us!  Please follow the link:  http://smile.amazon.com/ch/36-4401266 .

Once you are logged in you will see at the top of your screen that you are supporting the American Porphyria Foundation.

RSVP TODAY!
Patient Education and Support Meetings coming your way. Contact the APF today to RSVP! We look forward to seeing you there.

Patient Education and Support Meeting - San Francisco

LOCATION
UCSF Medical Center | 505 Parnassus Ave.| Room: S-157| San Francisco, CA 94143
DATE AND TIME
11/11/18 5:30pm - 11/11/18 7:00pm
Seating is limited. Please RSVP Today!!



Patient Education and Support Meeting - San Diego

LOCATION
Double Tree Hotel - San Diego - Hotel Circle | 1515 Hotel Circle South | San Diego, CA 92108 |
DATE AND TIME
12/01/18 6:00pm - 12/01/18 8:00pm
Room: SOLANA | Please RSVP Today! Please note that there will be a Porphyria Specialist on site. We look forward to seeing you there!






Get Involved




Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com

American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org

STAY CONNECTED

"Remember....Research is the Key to Your Cure!"

Michelle Bridges AIP

I spent my whole life with unexplained symptoms. Sometimes my legs would give out, and I would have back pain, abdominal pain, slurred spee...