Description
MSP (Minneapolis St Paul), MN – In honor of Rare Disease Day, which happens every year at the end of February, Thrive with PK Deficiency Organization, a nonprofit based in Minneapolis, MN, will be auctioning a piece of art entitled “Celebrating Rare and Wild” painted by one of its rarest of advocates, a twelve-year-old girl living with Pyruvate Kinase Deficiency (PK deficiency). The auction starts February 27, 2023, at 8:00 am EST and closes February 28, 9:00 pm EST, on the 32Auctions platform (more information below). Proceeds will be donated to Thrive with PKD (Pyruvate Kinase Deficiency) Organization, whose mission is to connect the PK deficiency community through support, increased social awareness, and advocacy.
The purpose of rare disease day is to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Conservative estimates place the number of rare diseases at about 7000 impacting over 300 million people globally, but recently, research conducted in 2022 by Rare-X counts 10,867 diseases including genetic and non-genetic diseases. PK deficiency is estimated to affect between 3 to 8 people per million, though the estimate is expected to be as high as 51 per million with proper diagnosis (Secrest 2020).
Lillian King, living in AR, was born with PK deficiency, which is a genetic, hemolytic anemia, and it also affects her brother William. In people with PK deficiency, red blood cells lack enough of the enzyme pyruvate kinase to convert glucose to energy. When red blood cells do not have the energy to do their job, they die prematurely and are not able to carry as much oxygen to the body. They also break easily, releasing iron and bilirubin into the blood, which causes problems. Both Lillian and William make frequent visits to doctors, hospitals, clinics, and have an close relationship with the pointy end of needles that are either taking blood samples or providing blood transfusions.
Symptoms affecting people with PK deficiency vary but include mild to severe fatigue, shortness of breath, memory issues, jaundice, yellowing in the whites of the eyes, headache, bone pain, and abdominal pain. Long term issues are related to iron overload in organs like the liver, heart, and endocrine system. To compensate for the increased breakdown of red blood cells, the bone marrow in people with PK deficiency works overtime to produce more red blood cells. This adaptation, along with other issues related to poor bone mineralization, may result in decreased bone density in adults as demonstrated in one study showing that about 51% of adults with PK deficiency with a median age of 34.5 years had osteopenia and 19% had osteoporosis (Al-Samkari et al.). Other comorbidities may include delays in growth and puberty, gall stones, enlarged spleen, fertility issues, hypothyroidism, diabetes, and pulmonary hypertension.
Lillian has suffered the effects of PK deficiency at an early age and as a result, has gone through several serious surgeries requiring her to be in the hospital quite often. She and her mother, Jennifer King, have figured out survival techniques for these visits, one of which is tapping into Lillian’s love of art. Lillian explains, “I learned how to draw while I was in the hospital because I had so much time and it was the only thing I could do.”
Over the past five years, Lillian’s distraction, graphic design, and painting, has turned into a talent and a gift. While attending a recent conference hosted by Thrive with PKD celebrating 60 years of PK deficiency, Lillian gave away some of her pieces to new friends. She also told her story of living with PK deficiency to a live and online audience. Lillian is a PK deficiency advocate with her bag of tricks (literally) and advice and encourages other kids to get involved. Lillian connects with other friends that have PK deficiency through social media providing support, fun, and of course, gifts of art.
Thrive with PK Deficiency Organization is honored to highlight Lillian’s dedication and resilience in the face of this rare disease. Please visit https://www.32auctions.com/ThrivewithPKD to place a bid on Lillian’s 16”x20” oil painting entitled, “Celebrating Rare and Wild”; starting bid US $50.00.
Thrive with Pyruvate Kinase Deficiency:
Auction website: https://www.32auctions.com/ThrivewithPKD
Item Description: A horze (zebra and horse mixed) with a multicolored mane in pinks, blues, yellows, and purples on a pink background pained in oil, on a 16” x 20” canvas. Lillian King created ‘Celebrating Rare and Wild’ for Thrive’s Rare Disease Day Awareness auction, which exemplifes the rare beauty in us all and helps remind us to dare to be rare.
Pickup/Shipping Instructions: Payments will be accepted through Venmo and PayPal for the winning bid, plus shipping and handling. The actual shipping cost will be communicated to you before shipping. Item will be shipped within 7-10 business days of receiving payments.
Website: www.thrivewithpkd.org
Twitter/Instagram: @twpkdnonprofit
Facebook:
• www.Facebook.com/twpkdnonprofit – Thrive with Pyruvate Kinase Deficiency Nonprofit Organization
• www.facebook.com/groups/645106032879223 – Thrive with Pyruvate Kinase Deficiency Support & Education Group
References:
Secrest MH, Storm M, Carrington C, et al. Prevalence of pyruvate kinase deficiency: a systematic literature review. Eur. J. Haematol. 2020 Aug;105(2):173-184. https://doi.org/10.1111/ejh.13424
Al-Samkari H, Grace RF, et al. P1544: Bone mineral density remains stable in pyruvate kinase deficiency patients receiving long0term treatment with mitapivat. Hemasphere. 2022 Jun;6(Suppl);1425-1426.
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