Friday, March 8, 2019

AHP- URGENT! URGENT! PAIN COMMENTS NEEDED ASAP!

URGENT! URGENT! PAIN COMMENTS NEEDED ASAP!
Make a public comment today through this link: https://www.regulations.gov/comment?D=HHS-OS-2018-0027-0001
These comments will help inform the federal government about the needs of patients with Acute Porphyria as they develop federal guidelines.
Patients, caregivers, and physicians can all comment. Share this link with others.
- Why you are writing
- Your diagnosis
- Description of your pain
- Unsafe drugs trigger an Acute Porphyria attack
- That opioids are the ONLY safe drug that helps to manage the severe pain of acute porphyria.
- Any personal details you would like to share
Don't wait - take 5 minutes and do this right away!

https://www.regulations.gov/comment?D=HHS-OS-2018-0027-0001&fbclid=IwAR3KC8ZSv0C7ks9wVSOElsF6t-cvs_-pt4Ts-5C2yDxNR1stpeKo796Fizw

3 comments:

  1. My two sons have EPP. We do not live, unfortunately near a specialist. Not one time that they have had an outbreak has a doctor given them anything for pain! Once when one of my sons was burning so bad a nurse practioner suggested I give him percocet, so she wrote a whopping 6 pills. This helped alot but wasn't near enough. They only need something perhaps 2 or 3 times a year. Not on a regular basis. When they go to the doctor's office, clinic or emergency room they are treated like drug seekers! They have never been on legal or illegal drugs. It's a horrible shame this drug epidemic does not allow people with real pain some relief. As a mother, it kills me to see my children suffer. Someone PLEASE help!

    ReplyDelete
    Replies
    1. Hello. Please call the APF 1-866-APF-3635 They can refer and offer assistance

      Delete
  2. I have been in relationship with my boyfriend for 2 year now and we were planning to get married soon and all of a sudden he left me for another girl, i really love this guy and never can imagine my life without him. I further tried all my best to get him back but all my effort to get him back in my life did not work out. It was on this faithful day, i came across some comments on a website about this great spell caster called Chief Dr Lucky, so many persons claimed that he help them to renew their relationship and bring their ex back, i had to contact him because he was my last hope. I contacted him through his email and he assured me that in two days time my boyfriend is going to leave the other girl and come back to me and it was a very great surprise to see my boyfriend coming back to me after two days. I am so very happy today that he came back to me and i achieved this with the help of Chief Dr Lucky, and i advice if you need his help too Email: Chiefdrlucky@gmail.com or Whats App: +2348132777335
    Website: http://chiefdrluckysolutionhome.website2.me/

    ReplyDelete

Judy Snyder Personal Story of AIP

JUDY SNYDER TYPE OF PORPHYRIA Acute Intermittent Porphyria (AIP) It was early April 1997, and I was truly enjoying my job as the...