Supporting Our Sickle Cell Survivors: Parent & Guardian Support Group

We're making a mad dash towards our goal of raising funds to support TeleTalks, workshops, SRKs, parking assistance, and more! You can help by ordering apparel here.

Sickle Cell Awareness All Year, Supporting Supporting Our Sicklers Parent Supporting Our Sicklers Parent & Guardian Support Group is celebrating 10 years of service in the Houston community. Funds raised in this campaign will continue our mission to assist pediatric sickle cell patients and their families with home health care items, Medical Center parking funds, educatio...

Early Christmas idea for warriors and their families!! Order window closes on 27 October.

Sickle Cell Awareness All Year, Supporting Supporting Our Sicklers Parent Supporting Our Sicklers Parent & Guardian Support Group is celebrating 10 years of service in the Houston community. Funds raised in this campaign will continue our mission to assist pediatric sickle cell patients and their families with home health care items, Medical Center parking funds, educatio...

S.O.S. periodically offers unique apparel with
empowering messages that helps spread awareness about sickle cell. Show
support & look good at the same time
with our unique designs. This year's design is a reminder that Sickle Cell Awareness is not just during September. Place your order at https://www.customink.com/fundraising/sickle-cell-awareness-all-year

Thanks to Vertex for helping us host such a wonderful celebration yesterday! More photos are on the way.

Living With Sickle Cell Disease in Their Words - Diagnosed But Not Defeated Living with Sickle Cell Disease is very challenging. Listen to individuals tell their story of sickle cell disease and how Camp Cell-A-Bration and the Sickle...

Due to the organization's focus on planning for the upcoming 10th Anniversary Celebration, the October 10th TeleTalk will not be held.
We hope you will be able to join us at this weekend's event or the next TeleTalk on November 14.

Sickle cell awareness day 30:

Last day of awareness month but don’t let the awareness stop!! Each one, teach one.

It's September!!!! Each one teach one.

Fact 29: Sickle cell disease is one of the genetic diseases that can be detected through prenatal testing. Both CVS and amniocentesis can tell expectant moms if the new baby will be affected by sickle cell.

Seats are filling up fast! Register today.

10TH ANNIVERSARY CELEBRATION A $15 contribution provides one entry to the event and lunch. Dress to impress in dressy casual attire, and enjoy an afternoon of celebration, education, and community support.

Sickle cell awareness month! Don’t forget!

Fact 28: The health insurance system was historically rigged to not care for people with chronic conditions. Companies set lifetime maximums on coverage and denied coverage to those with preexisting conditions.

The Affordable Care Act was important for sickle cell patients on private insurance. Prior to ACA, insurance companies would often set a lifetime coverage limit of $1 million. A 2022 survey study revealed that non-elderly lifetime SCD-related medical expenses add up to approximately $1.6 million for women and $1.7 million for men. Notably, participants also spent around $44,000 on out-of-pocket expenses. Now insurance companies are forced to continue coverage.

One less sickle cell drug..

Pfizer Voluntarily Withdraws All Lots of Sickle Cell Disease Treatment OXBRYTA® (voxelotor) From Worldwide Markets
September 25, 2024 05:00 PM Eastern Daylight Time
NEW YORK--(BUSINESS WIRE)--Pfizer Inc. (NYSE: PFE) announced today that it is voluntarily withdrawing all lots of OXBRYTA® (voxelotor) for the treatment of sickle cell disease (SCD) at this time, in all markets where it is approved. Pfizer is also discontinuing all active voxelotor clinical trials and expanded access programs worldwide.

Pfizer's decision is based on the totality of clinical data that now indicates the overall benefit of OXBRYTA no longer outweighs the risk in the approved sickle cell patient population. The data suggest an imbalance in vaso-occlusive crises and fatal events which require further assessment. Pfizer has notified regulatory authorities about these findings and its decision to voluntarily withdraw OXBRYTA from the market and discontinue distribution and clinical studies while further reviewing the available data and investigating the findings.

“The safety and well-being of patients is of the utmost importance to Pfizer, and we believe this action is in the best interest of patients,” said Aida Habtezion, Chief Medical Officer and Head of Worldwide Medical and Safety at Pfizer. “Our primary concern is for patients who suffer from SCD, which remains a very serious and difficult-to-treat disease with limited treatment options. We advise patients to contact their physicians to discuss alternative treatment while we continue to investigate the findings from our review of the data.”

Patients, physicians, pharmacists, or other healthcare professionals with additional questions about OXBRYTA should contact Pfizer Medical Information 1-800-438-1985. The company will keep patients, regulatory authorities, investigators and clinicians informed about actions and appropriate next steps for OXBRYTA.

The company does not anticipate that this event will impact its full-year 2024 financial guidance.

https://www.pfizer.com/news/press-release/press-release-detail/pfizer-voluntarily-withdraws-all-lots-sickle-cell-disease

Sickle cell awareness month!

Fact 27: People with sickle cell anemia can develop high blood pressure in their lungs. This complication usually affects adults. Shortness of breath and fatigue are common symptoms of this condition. Cardiopulmonary complications are the leading cause of death in patients with SCD, primarily resulting from diastolic heart failure (HF) and/or pulmonary hypertension (PH).

Echocardiography is the main non-invasive screening tool for pulmonary hypertension (PH) in Sickle Cell Disease (SCD).

It's September!!!! Each one teach one.
Sickle cell awareness day 26: Sickle cell patients, especially children, sometimes have the confusing task of determining whether a new pain is associated with sickle cell or some other cause. Pain can also be attributed to infection, trauma, and growing pains.

September is Sickle Cell Awareness Month!!!! Each one teach one.

Fact 25: Blood transfusions are helpful to sickle cell patients but too many transfusions result in iron overload. Blood contains iron, so each transfusion adds iron to the body. The body does not remove iron well. Dangerous levels of iron can cause problems in the heart, liver, and endocrine glands.

Sickle cell awareness month! Time to take a mental health day!!

Fact 24: As in other chronic diseases, people who have sickle cell disease may feel sad and frustrated at times. This can manifest itself in several different ways, including anxiety, depression and even psychosis over time.

A 2019 study reports that out of 73,225 people hospitalized with SCD, 8.6% also had depression. Depression was more common among adults aged 35–50 years and more likely to affect females than males. Although most people in the study were Black, white people were more likely to have depression.

It's September!!!! Each one teach one.

Fact 22: Jaundice in sickle cell patients is usually not due to liver or gall bladder problems. The breakdown of red blood cells releases bilirubin, a yellow-orange substance. When a person with sickle cell is experiencing the destruction of an increased number of red blood cells, the eyes may appear more yellow than usual. Increased jaundice could also be caused by dehydration.

Sickle cell awareness day 21:

Even if you don’t know anyone with the disease, you probably know someone with the trait. I had the trait for 45 years (35, knowingly) and rarely thought about sickle cell disease. But 2 parents with the trait have a 25% chance of a child with the disease.

Sickle cell awareness month! Stay healthy!!

Remember to register!

10TH ANNIVERSARY CELEBRATION A $15 contribution provides one entry to the event and lunch. Dress to impress in dressy casual attire, and enjoy an afternoon of celebration, education, and community support.

Sickle cell awareness month!! With flu season coming, SCD patients know to get the flu vaccine. What other vaccines are needed for health with SCD?

Fact 18: Up-to-date immunizations can prevent many of the more serious infections, especially pneumococcal bacteria, which causes pneumonia and other infections.
• All of your childhood immunizations should be up-to-date.
• Get a flu vaccine every year.
• Pneumococcal vaccines: Prevnar® at 2, 4, 6 and 12 months and Pneumovax® at 2, 5, and 15 years old
• Meningococcal vaccine at 24 months, 26 months, 5 years and then every 5 years
• Other vaccines that might be recommended by your medical team, such as hepatitis B and COVID.

Sickle cell awareness month!!

Some people have been cured of sickle cell disease. So why isn’t everyone in line for that?!

SCD can be cured for certain patients. A bone marrow transplant, which involves collecting healthy cells from a donor’s bone marrow and transferring them into a patient, can cure SCD. However, a bone marrow transplant may not be the best choice for all patients because it comes with serious risk. For sickle cell, because of unknown biological factors which affect transplant success, the donor should be a matched sibling. Chemo is used to prep the bone marrow for transplant; chemo has its own side effects and risks. Most institutions will not consider a transplant unless the disease severity is quite high. A bone marrow transplant expert can advise patients about whether or not it is a good choice for them.

Sickle cell awareness month! Day 16…

Delayed but not denied!! Many teens with sickle cell disease experience puberty later than others. The average delay is about 2 years. Some people may have a delay in puberty but others may not. It is important to remember that even if it is late, puberty will still occur.

Halfway through Sickle Cell Awareness Month! Help us continue to spread the message. Each one teach one!

Fact 15: People with SCD are at greater risk than the general population for high blood pressure in the lungs, which can be life-threatening.

Some signs and symptoms of high blood pressure in the lungs can include:

Difficulty breathing
Fatigue
Chest discomfort or pain
Swelling of the ankles, legs, or abdomen (belly)
Light-headedness or dizziness

A SCD patient should confer with their hematologist or pulmonologist if these symptoms persist.

Sickle cell awareness month! Bet you didn’t know…

What causes SCD patients to use assistive devices, such as crutches, walkers, or wheelchairs? Stroke...maybe. Bone damage...likely.

Fact 14: When blood flow is blocked in vessels that supply bone, the bone does not get enough oxygen and the bone tissue may die. Avascular necrosis results from the loss of blood supply to the bone in the hip or shoulder joint. This loss of blood causes narrowing of the joint and collapse of the bone. AVN can affect a single joint or more than one joint at the same time. The incidence of AVN in sicklers ranges from 3–50% based on the specific type of sickle cell. Symptomatic AVN has a high probability of progressing to hip osteoarthritis (OA), usually in the third or fourth decade of life; hip replacements, while improving, still have a high rate of surgical complications.