Friday, September 28, 2018

September is Pain Awareness Month

September is Pain Awareness Month

The month of September has been declared Pain Awareness Month. Pain Awareness Month is a time when various organizations work to raise public awareness of issues in the area of pain and pain management.
The first Pain Awareness Month was in 2001, when the ACPA led a coalition of groups to establish September as Pain Awareness Month. ACPA established Partners for Understanding Pain and 80 organizations, both health care professionals and consumer groups, including the NAACP supported the effort.


http://www.theacpa.org/wp-content/uploads/2017/08/Pain_Awareness_Month_History.pdf
The key to raising awareness is to get involved. There are many things that you can do to help promote Pain Awareness Month.
·      Talk with Friends & Family: Let them know that September is Pain Awareness Month. “Like” the ACPA on Facebook. Encourage your friends to do the same.
·      Talk with your Healthcare Provider: Let them know that September is Pain Awareness Month. You also can share the tools to better communicate with your healthcare team found at the links below:
·       
o   Videos
o   Resources
o   FAQs
o   Surveys


·      Call your local government and community leaders to let them know about Pain Awareness Month and issues of pain and pain management

·      Call your local media and ask them if they are doing a story on Pain Awareness Month.

·      Donate to the APF: Your contributions allow us to help fulfill our mission and work year-round to raise awareness and support for those with chronic pain. www.Porphyriafoundation.org


·       Take care of yourself! Take time out for yourself this month.

NEW! Member story of Jeannine Keith HCP


What is your name? Jeannine Keith

Type of Porphyria? Hereditary Coproporphyria (HCP)

When & how long before you were diagnosed? I started having symptoms in March of 2010 and got my formal diagnosis June of 2010. In May of 2010 my Gastroenterology Dr. Peter Heit sent me for a urinalysis of the porphyrin levels in my body after I had every other organ tested with no answers to my pain. When the urinalysis can back positive he found me my savior Dr. Bari.

Who was able to diagnose you? Name/place? Dr. Fazal Bari, Oncology and Hematology Specialists

What has been your experience with porphyria? It is an unknowing disorder and can sneak up on you at any time day or night. I have had more good days than bad thankfully.

What symptoms do you have and how long do they last for? I have dealt with pain in my side, back, and chest. I have also had experienced nausea, neuropathy, and suffer from anxiety. 

What treatment do you get?  How often do you have to get treatment? Since 2010 I have been doing IV therapy of D5W monthly. When I started this, I was going to my doctor’s office 3 days out of the month during my menstrual cycle and spent 4 hours getting my hydration in the office. After doing this for a few months and knowing that this type of treatment was working for me I got a PICC line. I had that for 6 weeks and was able to have a nurse come to my house and I could run my IVs from home. After I had the PICC line taken out, I had my first port in 2011. I had my port in for 2 years before opting to have it moved from its original position. I have had my second port since November 2012 and still do my IV therapy from home, work or wherever I am.

Do you think a new medication would help you? What I am doing has been helping me for the past 8 years. I am not sure if new medication would help me.

How does having porphyria affect your daily activities? It really doesn’t affect my daily activities unless I am having an attack. I live my life the way any person would, and I make sure I stay hydrated and attack free as best I can.
How has porphyria affected your life & family living? It is my way of living and I try not to let it affect my life or family living. I have this disorder, but I am not this disorder.

What are the positives of knowing you have a rare disorder? The positives are that when I have pain, nausea, vomiting or an anxiety attack I know what could most likely be the cause. I can also educate others about porphyria.

How do you keep yourself encouraged from day to day? I think about all the positives in my life and know that I am blessed. My 4-year-old son Ayden and my husband Sean are also my loves, my support and my heart.

If you could give an advice to another one suffering what would you say? Don’t let this disorder define who you are. You are strong and can fight this. I know having this disorder is terrible and we all have our good days and our bad days, but we have to keep our heads held high and smile because some days that is all that might get us through. Remember, you never know what someone is going through, and I like many, smile and say everything is ok but sometimes it is ok to be truthful and say when it is not ok.

How has the APF been there to assist you?  (Materials, videos, calls, FB) There website has many articles, blogs and useful information. I have met so many people through groups on FB and they are wonderful!

What else would you like to mention? I am very lucky to have an amazing support system of Family, friends and medical professionals. I want to thank my husband Sean for always being by my side, my son Ayden for always making me laugh & My parents for always being there for me through learning about this disorder and getting answers. I also want to give a huge thank you to Dr. Bari for giving me my life back because without you I don’t know where I would be with this disorder.


Thank you Jeannine Keith for sharing your inspiring journey with HCP!  You always encourage us.




Thursday, September 27, 2018

Baby Harmoni's Diagnosis of CEP Congenital Erythropoietic Porphyria.


Last year in October 2017, Me and my fiance found out we were pregnant with our first child & we could not have been more excited. After waiting so long at 38 weeks our sweet little girl Harmoni Grace was here weighing 8 pounds 1 oz and twenty one and a half inches long.

A short few hours after Harmoni was born she had what the nurses thought was what they call a brick dust diaper, which is normal in babies just not nearly as dark as Harmonis was or the quantity.

 We soon learned she was also born jaundice, so she was sent to the NICU to spend two days to help with the jaundice and to get to the bottom of the brick dust diaper. After two very long days and some testing doctors could not find anything wrong with Harmonis urine so we were cleared to head home.

 As excited as we were to bring our baby girl home we just knew something wasn't right. For two whole months after that me and my fiance spent almost every day in Valley Children's Hospital trying to get to the bottom of all of her problems and symptoms.

Almost every time we took her in for vomiting, the red diaper, her being lethargic, and not eating they sent us home and told us we have a colic baby and we should hold her more and we would have to let her cry it out sometimes, that answer was never good enough for me. As a mother I knew something just wasn't right.   Finally, after many trips to the emergency department we get admitted due to her hemoglobin being extremely low.

I can remember that day was a nightmare being questioned left and right and having a whole team of doctors come in to tell you your two-month-old has a hemoglobin that should be at her max limit which is a 13.6 but she is at the lowest a person should get a 7.0.

Doctors began to tell us that she will need a blood transfusion and we will be in the hospital until we can find the source of the bleed. This admission we spent almost two weeks in the hospital with the best doctors on our team to find some possible answers to what is going on with our baby girl.

On the fifth day the team of doctors came in, sat us down, & let us know they might have an answer to all of this madness going on with our sweet girl. They informed us they think Harmoni has Porphyria, and in that moment,  I think we reacted in any way any parents would with hearing a big medical term without knowing any knowledge of what it is or what comes with it.

After a little more information from several different doctors we were able to take a deep breath and brace ourselves for whatever was to come next. The next few days consisted of meeting with a hematologist and genetics doctor and TONS of testing.

The results would take some time to come back.

We were finally discharged when harmonies hemoglobin was at a safe level. We were advised her levels would have to be checked every two weeks to make sure her hemoglobin stays at a safe level and to make sure she won’t need another transfusion.


On September 6th she went in to test her levels and sure enough they were low again, so we were once again admitted for a transfusion and a Broviac Line placed. After two days Harmoni was safe enough to come home once again with the same routine of checking her blood levels every two weeks. On September 11th we got her results and it was confirmed she has Congenital Erythropoietic Porphyria.

Now, we are waiting for calls back to get into UCSF to meet with specialists to take the next step to helping her.

Even though she was diagnosed with porphyria will do everything in our power as her parents to make sure she in no way shape or form feels any different than others. And at only three months old our little girl is the strongest little girl I have ever met, we refuse to let this kick her butt, so we will always make sure she is Porphyria strong.

Thank you for sharing through a parent’s eye how special and wonderful your baby Harmoni is to you.  Harmoni you are very special to us and how wonderful it is to have such loving and caring parents fighting for you.

To learn more about Congenital Erythropoietic Porphyria (CEP) please call our office at 1-866-APF-3635 or view our website www.porphyriafoundation.org






Wednesday, September 26, 2018

Porphyria Post

Porphyria Post

Volunteers Needed!
The APF will be exhibiting at the two conventions this fall. Are you interested in volunteering at our booth? If so, please contact Edrin Williams, Director of Patient Services for additional information (edrinw@porphyriafoundation.org or 301.347.7166). This is an incredible opportunity to raise awareness about porphyria to those with little knowledge about this rare disease.

AASLD: San Francisco, CA
• Sunday, November 11 – 9:30 am - 3:00 pm time slots available
• Monday, November 12 – 9:30 am - 3:00 pm time slots available

ASH: San Diego, CA
• Saturday, December 11:00 a.m. - 5:00 p.m. time slots available
• Sunday, December 210:00 a.m. - 5:00 p.m. time slots available
• Monday, December 310:00 a.m. - 2:00 p.m. time slots available

EPP Clinical Trials
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 – contact the APF to learn more at 1-866-APF-3635 or porphyrus@porphyriafoundation.org

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

Access to Care Toolkit for the Acute Porphyrias
A downloadable Access to Care Toolkit is a resource designed to help patients living with Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), and Variegate Porphyria (VP) or their caregivers, loved ones and healthcare providers secure access to Panhematin at their preferred health facility. We have recently learned of patients who are being denied this treatment from some hospitals and directed to secure another healthcare provider. If this has happened to you or someone you know or care for, please use these tools to request help from your state and local representatives and health advocacy organizations. We understand the debilitating effects of acute porphyria and hope these resources will help you secure access to Panhematin when you need it most.

The Toolkit contains the following materials:

• Healthcare Conversation Tracker is a simple form to record your conversations with doctors, insurance agents, etc.
• Customizable letter templates to record your details to use for doctors, state departments, insurance, etc.
• Access to Care Fact Sheet defines AIP, its symptoms and why it's important for patients to get immediate care
• Patient Bill of Rights can be used to support your appeal for access to treatment

This Toolkit can be found HERE. Contact the APF office today if you have questions!

Panhematin Study - Participants Needed!
Do you have AIP, VP or HCP? Are you interested in participating in research? If so, we are recruiting volunteers for the Panhematin Study.

Our researchers need people to volunteer for the Panhematin study. Completing this study will help prevent insurance companies from not paying for this treatment.

The purpose of this study is to determine if Panhematin is safe and effective for prevention of acute attacks of porphyria.

Please contact Edrin at the APF office (301.347.7166) if you are interested in participating.

Safe/Unsafe Drug Questionnaire for the Acute Porphyrias (AIP,VP,HCP & ADP) - VERY IMPORTANT
The APF is collaborating with researchers to identify new safe and unsafe drugs. We need your help. Are you experiencing adverse effects with any of your new medications? If so, please let us know in the questionnaire below how it affected you. We will share these results with our team of renowned Porphyria experts/researchers. They are in the process of updating our safe and unsafe drug list for the acute porphyrias. Your donations will help us educate physicians about the dangerous effects of unsafe drugs. Please click on the link below for the Questionnaire.

Safe and Unsafe Drug Questionnaire

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 - Cincinnati

LOCATION
Cincinnati Children's Hospital | 3333 Burnett Ave. | Room D2.28 | Cincinnati, OH 45229
DATE AND TIME
09/29/18 11:00am - 09/29/18 2:00pm
We appreciate everyone who sent in their RSVP! We hope to see you on Saturday!!

See you on Saturday!

Patient Education and Support Meeting - Missouri

LOCATION
Mound Ridge Retreat and Mission Center | 31 Agape Lane | Cook Station, MO 65449
DATE AND TIME
10/27/18 12:00pm - 10/27/18 2:00pm
Question and Answer session by Porphyria Expert via Skype. Family and Friends are welcome to attend. Lunch will be provided.

I'll be there!

Maybe

I can't make it

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!!

I'll be there!

Maybe

I can't make it

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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

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

The Porphyria story of Victor LaFae with HCP

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