Tag: medical research

Adoption

FDA Warning for Ethiopians

Brandi C

FDA Warning for Ethiopians

FDA Warning for Ethiopians
Photo by Kelly on Pexels.com

This is an updated post on the FDA Warning for Ethiopians. Understand, I am not a doctor and I am not advising you to do anything medically related. Please consult with your physician regarding this information. Also, please have them do their research before blindly administering these medications to your loved one.

The reason I say that is because when we were faced with a surgery, for our child, we would have never known this information. The reason we knew it is because my sister had also adopted from Ethiopia and she was made aware. I believe she was made aware through her adoption agency and support group.

A Little Bit About Our Story

There is not much I will share regarding the surgery that we needed for our child. However, I will share that when we went in, we informed the doctors and the anesthesiologist, they told us they had never heard of that before. We stood our ground and the surgery did not proceed until they thoroughly researched this topic.

Upon review (after quite a bit of time), they did come back and apologize to us. It is now flagged at this hospital (and other hospitals that we have attended). It isn’t just flagged for our child, it is flagged for people that are from Ethiopia. Granted, nothing may have happened but I wasn’t going to let my child be the guinea pig.

Warning

Here is the brief snippet from the article that is listed below:

“Some individuals may be ultra-rapid metabolizers because of a specific CYP2D6 genotype (gene duplications denoted as
1/1xN or 1/2xN). The prevalence of this CYP2D6 phenotype varies widely and has been estimated at 0.5 to 1% in
Chinese and Japanese, 0.5 to 1% in Hispanics, 1 to 10% in Caucasians, 3% in African Americans, and 16 to 28% in North
Africans, Ethiopians, and Arabs. Data are not available for other ethnic groups. These individuals convert codeine into its
active metabolite, morphine, more rapidly and completely than other people. This rapid conversion results in higher than
expected serum morphine levels. Even at labeled dosage regimens, individuals who are ultra-rapid metabolizers may have
life-threatening or fatal respiratory depression or experience signs of overdose (such as extreme sleepiness, confusion, or
shallow breathing).”

The website through the FDA can also be reviewed with your health care professionals. You can always go to All Africa to read more.

Related Topics:

Resources for Special Needs Kids

 

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

New Video from NORD

Brandi C

New Video from NORD

New Video from NORD

Here is a brand New Video from NORD. For those who have no clue what NORD is…it is the National Organization for Rare Disorders. This site does not have run-of-the-mill type of conditions. By “run of the mill,” I mean those diagnosed frequently.

Awareness

This site is all of the hardcore, rare, little to no treatment type of condition. I am very excited that Mike Michaelis and his team have worked hard on the OMS Life Foundation.

Who DOES NOT buy things from Amazon? If you do, you can go to Amazon Smile and make all your purchases there. It is the same as Amazon, only this time, a percentage of what you buy goes to a charitable donation.

Amazon Smile does not cost you a dime:

  1. Choose your charitable organization and type in “OMSLife Foundation” (in Cypress, TX).
  2. Select that option.
  3. Anything you spend will help the foundation raise money and increase awareness of H’s condition.

NORD Rare Disease Video Library

“The NORD Rare Disease Video Library houses educational videos on rare diseases for patients, caregivers, students, professionals, and the public. NORD works with medical experts and patient organizations to develop the videos, which are made possible by individual donations, educational grants, and corporate sponsorship. NORD is solely responsible for the content.”

All About Opsoclonus Myoclonus Syndrome

All About OMS

If you click on the above link, it will take you to an awesome video that explains OMS very simply. All the things in my head have formed into a video. I am pleased as punch for them to highlight this condition.

OMS is not a “money maker” because it is so rare. That means funding and research are not done because there is nothing for big pharmaceutical companies to make. These kids are like human experiments. It is all trial and error.

Let’s bring light and awareness to this condition and help kids get a PROPER diagnosis and begin proper treatment. I don’t want another family to deal with everything H has.