Comparison timestamp: 2025-05-07 13:53:50 UTC
RestoredCDC URL: http://restoredcdc.org/www.cdc.gov/sickle-cell/stories/the-johnson-family.html
Live cdc.gov URL ↗: https://www.cdc.gov/sickle-cell/stories/the-johnson-family.html
RestoredCDC URL: http://restoredcdc.org/www.cdc.gov/sickle-cell/stories/the-johnson-family.html
Live cdc.gov URL ↗: https://www.cdc.gov/sickle-cell/stories/the-johnson-family.html
Removed: Line removed from cdc.gov. Specific word removals are highlighted.
Added: Line added to cdc.gov. Specific word additions are highlighted.
Injected:
Line or disclaimer added by RestoredCDC.org.
Unchanged: Line unchanged.
Original site: www.cdc.gov/sickle-cell/stories/the-johnson-family.html | RestoredCDC.org is an independent project, not affiliated with CDC or any federal entity. Visit CDC.gov for free official information. Due to archival on January 6, 2025, recent outbreak data is unavailable. Videos are not restored. Access data.restoredcdc.org for restored data. Use of this site implies acceptance of this disclaimer.[More]About Us Report Bug Compare ContentSkip directly to site content Skip directly to searchAn official website of the United States governmentHere's how you knowOfficial websites use .govA .gov website belongs to an official government organization in the United States.Secure .gov websites use HTTPSA lock ( ) or https:// means you've safely connected to the .gov website. Share sensitive information only on official, secure websites.Sickle Cell Disease (SCD)Explore TopicsSearchSearchClear InputFor Everyone* About* Data and Statistics* Communication Resources* Steps to Better Health Toolkit* What Is Sickle Cell Trait?* Complications of Sickle Cell Disease* Sickle Cell Data Collection (SCDC) Program* Real Stories from People Living with Sickle Cell Disease* Real Stories From People Living with Sickle Cell Disease* View allHealth Care Providers* Scientific Articles about Sickle Cell Disease* Sickle Cell Information for Healthcare Providers* View allView Allsearch close searchsearchSickle Cell Disease (SCD) Menu CloseSickle Cell Disease (SCD) MenusearchFor Everyone* About* Data and Statistics* Communication Resources* Steps to Better Health Toolkit* What Is Sickle Cell Trait?* Complications of Sickle Cell Disease* Sickle Cell Data Collection (SCDC) Program* Real Stories from People Living with Sickle Cell Disease* Real Stories From People Living with Sickle Cell Disease* View All HomeHealth Care Providers* Scientific Articles about Sickle Cell Disease* Sickle Cell Information for Healthcare Providers* View AllView All Sickle Cell Disease (SCD)About Data and Statistics Communication Resources Steps to Better Health Toolkit What Is Sickle Cell Trait? Complications of Sickle Cell Disease Sickle Cell Data Collection (SCDC) Program Real Stories from People Living with Sickle Cell Disease View AllAbout Data and Statistics Communication Resources Steps to Better Health Toolkit What Is Sickle Cell Trait? Complications of Sickle Cell Disease Sickle Cell Data Collection (SCDC) Program Real Stories From People Living with Sickle Cell Disease View AllMay 15, 2024Personal Story: The Johnson FamilyAt a glanceChris Johnson's legacy lives on after his battle with sickle cell trait (SCT) complications. After he died from renal medullary carcinoma (RMC), a rare kidney cancer linked to SCT, his mother, Ritchie, started a foundation in his honor. Read more below.The Johnson family's storyQuote"When you lose your child, it's real. People will tell you time will heal, but it doesn't really heal. You just learn how to cope." —Ritchie JohnsonChris was born with sickle cell trait (SCT), a genetic condition that occurs when a child inherits one sickle cell gene and one normal gene from the parents. When two sickle cell genes are inherited, the child is born with sickle cell disease (SCD), which can cause pain, acute chest syndrome, stroke, and other serious health problems. SCT is often seen as a less dangerous condition compared to SCD because people with SCT often do not experience the painful and life-threatening symptoms of SCD.After a newborn screening revealed Chris had SCT, the hospital provided little information on the condition. "I was told that SCT was nothing to worry about and that you could live a long, normal, and healthy life without any problems," said Ritchie.Chris had an active childhood and played sports. He earned a football scholarship from the University of New Mexico. SCT never limited his lifestyle.At the age of 38, Chris saw blood in his urine. At the emergency room, a CT scan found a tumor in his right kidney. Chris was diagnosed with an extremely rare form of kidney cancer known as renal medullary carcinoma (RMC). Common symptoms of kidney cancer include pain in the lower back, blood in the urine, and weight loss.RMC has been linked to SCT. RMC is aggressive and typically leads to death. At the time of Chris' diagnosis in 2011, there were no clinical trials (research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans) related to RMC.Chris and Ritchie were shocked. Before the diagnosis, Chris had lower back pain that continued for several years. He visited a primary care physician, a chiropractor (a doctor who specializes in diagnosing and treating disorders of the musculoskeletal and nervous system, especially in the spine), and even received physical therapy for the pain, but it never went away. Chris thought the pain was a football-related injury received in college or from a previous car crash. He never expected the pain to be a symptom of a kidney cancer linked to SCT. Even his healthcare providers never considered his pain to be linked to SCT or kidney cancer.By the time Chris was diagnosed, the cancer was stage 4. Chris needed medical treatment immediately.At the hospital, Chris was treated with chemotherapy and additional cancer treatments often used to treat other types of kidney cancer. Treatment was expensive, and at one point, hospital bills reached more than half a million dollars. Chris fought the cancer for one year until his body became de-sensitized to the treatments and rejected chemotherapy. "The cancer went through his body like wildfire," said Ritchie. Chris passed away 3 months later in the fall of 2012.ImpactIn honor of Chris, Ritchie founded the Chris "CJ" Johnson Foundation in 2013. While Chris received treatment, he understood the need for awareness and information on kidney cancers, especially RMC and its link to SCT. The foundation raises awareness and donates funds to advance RMC research, and it provides education and support to families battling RMC."We're working with pediatricians in the Houston area to have them look out for certain symptoms when a child is diagnosed with SCT. We're not trying to scare anyone, but we want people to be aware of any possible symptoms that might be associated with RMC. Awareness is extremely important. We need to get the word out about RMC, and not just in the United States, because we have patients all over. We need to get this information out globally so that we can make a difference, and one day, hopefully, find a cure for RMC," said Ritchie.Although the pain of losing a child never goes away, Ritchie finds peace by helping others understand and cope with a devastating diagnosis. "The main thing is staying positive and not giving up. Even though my son was 39 years old when he passed, it's still scary. People can reach out to us [the foundation] for emotional support or whatever they need. They need someone to talk to during this time. Think positively and don't give up. Stand strong and fight it," said Ritchie.CDC would like to thank Ritchie Johnson for sharing her story.Related PagesView AllBack to Top* Real Stories From People Living with Sickle Cell Disease* The Green Family* Harry* Joshua* LametraView All Sickle Cell Disease (SCD)JoshuaMay 14, 2024Sources Print ShareFacebook LinkedIn Twitter SyndicateContent Source:National Center on Birth Defects and Developmental Disabilities (NCBDDD)Related PagesView All* Real Stories From People Living with Sickle Cell Disease* The Green Family* Harry* Joshua* LametraView All Sickle Cell Disease (SCD)Back to TopSickle Cell Disease (SCD)Sickle cell disease (SCD) is a group of inherited red blood cell disorders. In SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle.”View AllFor Everyone* About* Data and Statistics* Communication Resources* Steps to Better Health Toolkit* What Is Sickle Cell Trait?* Complications of Sickle Cell Disease* Sickle Cell Data Collection (SCDC) Program* Real Stories from People Living with Sickle Cell Disease* Real Stories From People Living with Sickle Cell DiseaseHealth Care Providers* Scientific Articles about Sickle Cell Disease* Sickle Cell Information for Healthcare ProvidersSign up for Email UpdatesContact UsContact Us* Call 800-232-4636* Contact CDCAbout CDCAbout CDC* Pressroom* Organization* Budget & Funding* Careers & JobsPolicies* Accessibility* External Links* Privacy* Web Policies* FOIA* OIG* No Fear Act* Nondiscrimination* Vulnerability Disclosure PolicyLanguagesLanguages* EspañolLanguage Assistance* Español* 繁體中文* Tiếng Việt* 한국어* Tagalog* Русский* العربية* Kreyòl Ayisyen* Français* Polski* Português* Italiano* Deutsch* 日本語* فارسی* EnglishArchive* CDC Archive* Public Health PublicationsContact UsContact Us* Call 800-232-4636* Contact CDCAbout CDC* Pressroom* Organization* Budget & Funding* Careers & Jobs* About CDCPolicies* Accessibility* External Links* Privacy* Web Policies* FOIA* OIG* No Fear Act* Nondiscrimination* Vulnerability Disclosure PolicyLanguagesLanguages* EspañolLanguage Assistance* Español* 繁體中文* Tiếng Việt* 한국어* Tagalog* Русский* العربية* Kreyòl Ayisyen* Français* Polski* Português* Italiano* Deutsch* 日本語* فارسی* EnglishArchive* CDC Archive* Public Health PublicationsHHS.gov USA.gov
Note: Comparison ignores leading/trailing whitespace
and certain script/tracking codes. Word-level
highlighting (optional above) only applies to changed
lines.