Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February.
According to the official site for Rare Disease Day, the primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.
Some key facts about Rare Diseases are:
- There are 300 million people worldwide who live with a rare disease
- Bleeding from cuts or injuries that lasts longer than 10 minutes
- There are over 6000 different rare diseases
- 72% of rare diseases are genetic and
- 70% of these genetic rare diseases begin in childhood
Plasma P.A.L.S.
Many of our Plasma P.A.L.S. have rare and serious diseases and rely on plasma-based therapies to live happy, healthier lives. Plasma derived medicines treat those with immunodeficiencies, hereditary bleeding disorders, neurological disorders, breathing disorders, and more. Learn more about what Plasma P.A.L.S. is by clicking here.
Meet some of our Plasma P.A.L.S.
AIMEE – Primary Immunodeficiency
Aimee is from Las Vegas, Nevada and has something called primary immunodeficiency or PI. Primary immunodeficiencies are a group of more than 450 rare, chronic conditions in which part of the body’s immune system is missing or does not function correctly. These conditions can affect anyone, regardless of age, gender, or ethnicity.
Yet Aimee doesn’t let PI stop her. She says, “I am finally able to enjoy traveling. Recently, I learned to motorcycle ride and then I did lots of it! I rode 10,000 miles in five months. I’m happy to say that IGG has me doing more than ever, whether I’m at home or away on some excursion.”
“I am headed back to Washington D.C. this year for Rare Disease Day. I will speak about PI and how I rely on medicine made from plasma. Even though I went back on IGG this year because of lung nodules, I was able to be off it for almost two years thanks to the therapy,” she adds.
Aimee says, “Before receiving a therapy made from plasma, I had a fear of leaving the house because that could mean possibly getting sick and even ending up in the hospital. Now, I don’t have that fear and can enjoy my friends, going out to eat, enjoying special events and arts and crafts events. Who knows, I might even add another 10,000 miles on my bike soon thanks to donors.”
People who donate life-saving plasma have changed her life and motivate her to live each day to the fullest. “Thank you, plasma donors for showing up each day to help people like me. The amount of time and energy you spend donating makes a long life-changing experience for individuals who need regular treatments made from plasma,” she concluded.
For more information go to https://primaryimmune.org/
EDEN – von Willebrand disease
Eden is a cheery, energetic nine-year-old who lives with her family in Newark, Delaware. Looking at Eden you would never guess she has a bleeding disorder known as von Willebrand disease or VWD*.
It’s been estimated there are 3.2 million people in the U.S. who have VWD. It is an inheritable bleeding disorder. Because Eden is adopted, her mothers don’t have VWD. “In 2019 my wife and I adopted Eden and her brother Ethan out of the Pennsylvania foster care system. Not only is she adopted in real life, but she is also now adopted by the Newark 213 CSL Plasma family,” says Exie Westmoreland. She is also the Center Manager for this center.
Exie adds, “We don’t know if her brother Ethan will have VWD. We will wait and see. However, we know that our children can rely on plasma-based therapies to treat VWD. People with VWD are either missing or low in the clotting protein von Willebrand factor (VWF) or it simply doesn’t work as should.”
In addition, Eden is allergic to dairy and must have surgical procedures to check on her gastrointestinal system. Her mother says, “Every time she has a procedure, Eden must have a plasma-based therapy infused. Before Eden was diagnosed, the bruising and bleeding were bad every time she had a surgical procedure. We are counting on plasma donors to give plasma so Eden can grow and thrive.”
Eden loved playing the Addams Family character Wednesday at Halloween and loves being silly, playing with her friends, and enjoying video games. Exie says her favorite color is pink, and she is in the third grade at a school in Wilmington, Delaware. Last year Eden got to visit the Aston and Newark centers.
*VWD is the most common bleeding disorder, affecting about 1 in every 100 people, according to the Centers for Disease Control and Prevention (CDC). The National Bleeding Disorders Foundation advises the main symptoms of VWD are:
- Frequent (more than 5 a year) nosebleeds that last longer than 10 minutes
- Bruising easily, with bruises that are raised and larger than a quarter
- Being told you are “low in iron” or have been treated for anemia.
- Heavy bleeding after any surgery including dental surgery
- Having someone in your family who has one or more of these symptoms
- Have someone in your family who has been diagnosed with a bleeding disorder such as von Willebrand disease or hemophilia.
- For women, girls and those who menstruate:
- o Heavy periods, also called heavy menstrual bleeding, (having to change one pad or tampon every hour) or periods that last longer than 7 days
- o Heavy bleeding after childbirth or miscarriage
SOURCE https://www.bleeding.org/
LOGAN – Immune Thrombocytopenia
Imagine being a young kid and telling your friends you have Immune thrombocytopenia (ITP). Logan was that kid, and he received his diagnosis when he was eight. ITP is a rare autoimmune condition that can be as challenging to pronounce as it is to live with.
ITP is characterized by low blood platelet counts. This rare and serious disease is caused by the body’s immune system destroying healthy platelets that leads to easy or excessive bruising and bleeding. The bleeding results from unusually low levels of platelets which are the cells that help blood clot.
When he was young, Logan was not able to participate in sports and many other fun activities like his friends. It was tough to watch, notes his mother Jana. She says, “Therapies made from plasma helped change things for the better for Logan. His treatments helped him have a more typical life as a young child and into his teens.”
Jana adds, “Now he's off at college and I'm not with him all the time, but I don’t worry as much knowing that medicine is available to treat his ITP. Logan always said that plasma donation was an amazing act of love and kindness and I echo that same message.” Logan is currently attending Georgia College and State University and is studying Nursing. “Because of his ITP diagnosis, he has always been interested in the medical field out of a desire to help others. I am very proud of him and know that if it wasn’t for plasma-based therapies, he might not be here today,” stressed Jana.
For more information, go to https://pdsa.org/
Donate Plasma at CSL Plasma
You have the power to do amazing things. Find a CSL Plasma donation center near you and donate plasma today if you are eligible! To learn more about eligibility requirements, explore our blog, Qualifications for Donating Plasma!
