Does Your State Test for This Rare Disease? #WearYellowForSeth

You may not recognize the term Severe Combined Immunodeficiency (SCID), but you’ve probably heard its more common name: “Bubble Boy syndrome” or “Bubble Boy disease.” A person diagnosed with SCID essentially has to live in a bubble, a world that’s free from as many germs as possible. Otherwise, he or she could be stricken with an illness that, though perfectly fine for our healthy immune systems, would be fatal in his or her case.

David Vetter

Source: Baylor College of Medicine Photo Archives, CBS News

The most famous example of a person with Bubble Boy syndrome was David Vetter. Vetter spent the first several years of his life in Texas Children’s Hospital before moving home to live in a sterilized plastic bubble chamber in his home, kept inflated by large generators. All objects entering the chamber had to undergo a lengthy sterilization process, and Vetter could only touch objects outside the chamber using gloves attached to its walls. NASA developed a spacesuit-like bubble suit which he could wear in order to venture out into the outside world, but it was bulky and hard to wear and Vetter only used the suit 7 times. He died at age 12 after catching a cold from a bone marrow transplant.

Seth

Seth. Source: GoFundMe

Now, a new boy with this disease is making headlines and raising awareness about this rare but devastating condition. Seth is a 5-year-old boy from the United Kingdom suffering from SCID. Despite his condition, Seth is an upbeat five year old and among other things, he loves the color yellow!

Seth and his parents have asked the world to wear yellow this Friday, March 27, to support Seth, and post an image of themselves to social media with the hashtag #WearYellowForSeth. Their goal was not to raise funding necessarily for Seth’s second bone marrow transplant, but to at least raise awareness of SCID.

You can view Seth’s video announcement below:

Does Your State Test for SCID?

SCID is not a common problem; only about one out of 50,000 or 100,000 births results in a baby with SCID. Yet rarity does not negate the fact that early intervention is the key to ensuring that every infant born with SCID is diagnosed immediately. The faster diagnosis is made, the higher the chance that SCID can be managed.

Thanks to the Centers for Disease Control and Prevention, SCID screening in newborns is now beginning to become mainstream. Hospitals now send bloodwork to labs where a host of diseases – including SCID – will be tested. This enables children with SCID to have a better chance of getting a bone marrow transplant early enough to make a difference.

However, some states still do not test newborns for this disease. Does your state? Check the map below:

States That Screen for SCID

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This image is licensed under a Creative Commons Attribution-NoDerivs 3.0 United States License.

The states pictured above in yellow are currently not screening for SCID. With your help in the effort to raise awareness by participating in #WearYellowForSeth, maybe we can change that.

How to Participate in #WearYellowForSeth

Participating is easy. Here’s how:

  1. Spread the word! Get as many as your friends and coworkers as possible to wear something yellow this Friday.
  2. Wear yellow on Friday, March 27. It doesn’t have to be a shirt – pants, shoes, a bracelet, anything yellow counts!
  3. Share with the hashtag! Snap a selfie or get a group together for a photo and share it on Facebook, Twitter, and/or Instagram using the hashtag #WearYellowForSeth.

If you are interested in doing more to help Seth and his family directly, consider donating a few dollars to his campaign on GoFundMe. It will help his family afford his second bone marrow transplant.

Share this post and the graphic above in order to help get the word out!

More Information About SCID

Why Does SCID Occur?

Researchers have established that SCID occurs when babies are born without a sufficient number of white blood cells. White blood cells are what fend off infections, colds and similar organisms. Without a bevy of white blood cells, an infant is essentially helpless. Thus, the “sniffles” could be deadly to a child who has no way to combat germs.

SCID Treatment

Treating SCID is a tricky proposition. In most cases, at least one bone marrow transplant is necessary to try to save the life of the SCID-diagnosed baby. Some researchers feel that any bone marrow transplants should be performed within the first three to four months of the baby’s life; but there has been a problem with ensuring babies with SCID get bone marrow transplants because until recently, most states did not test newborns for the disease.

Children Living with SCID

Children who were not diagnosed early with SCID have a very low life expectancy, although some who received treatments including bone marrow transplants and were kept in a sterile “bubble” environment can live for a number of years.

The Future of SCID

As more hospitals and medical centers begin to test SCID in newborns, the likeliness of new treatments being developed and discovered rises. For now, it’s important for every parent to insist that their baby be tested for SCID.

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