Meet Maia Talley. Maia, like many others whom you wouldn't even suspect by just looking at them because "they don't look sick, and/or look like they have a disability," was diagnosed at birth with Sickle Cell Anemia (SS), and she was first hospitalized when she was just six months old. Maia, like many others whom you wouldn't suspect, is a Sickle Cell Warrior!
Sickle Cell Anemia is a very chronic, can be complexed, often debilitating, excruciatingly painful blood disease where the pain crisis can either increase over time, or it can come completely out of nowhere with such great intensity that the Warrior just starts screaming, yelling, and crying with no warning out the blue! It can cause loss of the use of their organs, lead to strokes, it compromises their immune systems, causes swelling/joint pain which often limits the use of their limbs/joints so they cannot stand or walk by themselves, and many times they require assistance from their caregiver to help lift, carry, and/or move them, or they have their crutches and/or even a walker/wheelchair when necessary. All of which (including many other Sickle Cell Anemia health related things) contribute and help to prevent Sickle Cell patients from being able to consistently go to school and/or work without missing significant amounts of time away; then they have to do a lot of "catch up work" to try to keep up and stay on top of everything. Unfortunately, many times Sickle Cell patients (and/or their caregivers) even lose their jobs due to their chronic illness. It also requires daily needed medications, that many insurance companies don't/won't pay for, so unfortunately many times these patients have to either go without them, or choose between medications and/or groceries/paying rent and bills a lot of times because many of their medications are expensive (one of Maia's medicines alone costs $1449.56, but thankfully her insurance covers it, but that is not the case for far too Many Sickle Cell Anemia patients). Additionally, Sickle Cell Anemia requires numerous specialists'/doctors' appointments (although many Sickle Cell Anemia patients cannot see them due to either their insurance doesn't cover these providers, there just aren't enough providers who specialize in this area of expertise, and/or the providers just aren't trained to properly and effectively care for the Sickle Cell population in their respective living areas). There are frequent hospitalizations as well...as Sickle Cell Anemia can also be life threatening if proper medical attention is not received in a timely manner!
Many times, Sickle Cell Anemia presents itself differently in each person who has the disease...thus is why it is called "A disease within itself" because not everyone is necessarily affected by/presents in, and/or their bodies responds to it in the same way...although their "Sickle Cell Pain Crisis and Pain Levels Are ALL REAL"...and, "YES, THEY REALLY ARE IN THAT MUCH PAIN!!!" Maia is one of the ones whose Sickle Cell Pain Crisis has never "Gone with the norm," and/or been "textbook protocol" because "Maia's norm" has always just been different...and that is true for many Sickle Cell Warriors!
Maia is now 25 years old, and since her first hospitalization at six months old, she has been admitted way too many times to keep count of and she's had equally the amount, if not more, of blood transfusions as she has had admissions. Maia has averaged 3-5 admissions per year (although as of November 2023, she has already had 7 admissions thus far). With an average hospital stay of 2-3 weeks per admission, and her receiving anywhere from 1-6 bags of blood during her blood transfusions per admission...Maia's body built up dangerous levels of iron from all the blood that she has received over these years, so she now must take yet another pill that removes the excess iron from her body...and this happens to many Warriors as well! While hospitalized, Maia (like most Sickle Cell Warriors), is stuck frequently (many times more than necessary) because either they couldn't get the vein, and/or the veins just blew because of all the scar tissue from having been stuck so many times over the years, which causes them to be "a hard stick" to get. Maia (like other Warriors) is placed on oxygen and all kinds of monitors, gets x-rays, CT scans, ultrasounds, and sometimes MRIs, and she requires narcotic PCA pain medications pumps...which aren't always given, and/or given on time due to the lack of knowledge and stigmas of a few Providers who are not actually trained in working with Sickle Cell Anemia patients/"Sickle Cell Pain Crisis" levels. Many times, Warriors are seen by and/or admitted with hospital ER Providers/Attending Physicians/Nurses that don't always understand/aren't always knowledgeable about Sickle Cell Anemia, yet alone the severity of pain that these patients are in because those were "the only beds available in the hospital since the hospital is full at this time." Try imagining the worst pain that you have ever experienced...or even imagine having your "bones rubbing on other bones continually, all day everyday" from Sickle Cell Anemia Avascular Necrosis pain in your shoulders/hips/knees (like Maia, and many other Warriors have, and then still the many that have to have surgery to get replacements because of it). Now imagine that type of pain literally happening Nonstop All Over Your Body at the same time, and you don't have anything, or any way, to make that pain stop/go away...so it just keeps intensifying...with no relief! Most of those same Physicians/Nurses don't understand the complexity of this disease so they are often quick to discharge the Warriors from the ER or the hospital. They often won't listen to neither the patient nor their caregiver(s) who have lived/are living with this disease everyday of their lives...but instead they'll go with their textbook knowledge (of cases that aren't really related to Sickle Cell Anemia at all) and/or their other types of experience(s) that they think/feel should work, but in reality have absolutely nothing to do with properly and effectively caring for/treating, Sickle Cell Anemia/Sickle Cell Pain Crisis. And for those types of providers to think that these Warriors "are drug seekers/drug seeking" and/or "they are not/can't be in that much pain"...is the furthest from the truth because not one Sickle Cell patient, that we know/have known, wants to be in the amount of excruciating pain that they deal with on a daily, nor do they want to have to get hip/joint replacements due to bone degeneration from lack of blood/oxygen being able to get to those areas of their bodies, nor do they like having to be sick, lose the use of and/or have organ failure/have to have their organs removed, or be prone to have strokes, have to receive other people's blood, nor have to get monthly infusions on top of all of the other daily medications that they have to take, and/or have their life at risk on a daily because their immune systems are low and that makes them more prone/susceptible to getting sick/infections, and/or frequent the hospitals/specialists, or miss out on doing things that they would Love to do...but can't, so they have to watch from the sidelines and/or inside looking through a window because they cannot be in extreme hot nor cold temperatures because then their bodies can go into shock and cause additional pain crisis/hospitalizations. Neither do they want to not be able to work and/or risk losing their jobs and not being able to pay their bills due to missing so much time away, yet still having their medical bills continually racking up because they/the caregiver's loved one is sick/hospitalized and that causes them even more stress because they don't know what they're going to do and/or how they are going to make it. With "Stress" being the Biggest Trigger that both causes and prolongs their crisis, it becomes a vicious extended cycle for them and makes everything worse! Nor do they want to have their health and lives at risk 24/7, 365 days of the year...all due to this chronic, potentially life-threatening disease, and the fact that many Physicians/Nurses (Not all of them, because some Really do have a heart, passion, and compassion for Sickle Cell Warriors, Sickle Cell Anemia and Bleeding Disorders Communities...but the ones that don't, and) view these Warriors as "drug seeking/drug seekers" definitely don't understand this disease...because the truth of the matter is...No One Willingly Wants, and/or Signs up for, Sickle Cell Anemia, Sickle Cell Pain Crisis, Nor This Way Of Life...On Purpose!!!
So, our having experienced, lived/still living, and hearing the same experiences and stories being told by other Warriors and their families, and needing to advocate for, and bring more awareness and resources to the Sickle Cell Anemia and Bleeding Disorders Community, and Community Health Issues, is exactly why the Maia Talley Foundation Inc., a 501(c)(3) nonprofit organization, was formed. Together we can bring positive changes to these underrepresented, underserved, and at risk communities not just locally and nationally, but globally as well, as there are approximately 300,000 people who have been documented/diagnosed with having Sickle Cell Anemia in the world...with approximately 200,000 of whom are living in Africa, and approximately 100,000 whom are living in the United States of America (although Many more have Not even been tested for Sickle Cell Anemia)...and we have to change this and make sure that testing is available, bring more awareness, advocate for and properly assist those who do have it, because their needs are Great. Most importantly we need to find a/an affordable cure for Sickle Cell Anemia...which all takes a village, and with help from our donors, we can make it happen!!!
We thank you for your support, and donations to the help our cause...they are greatly appreciated!!!
Sincerely,
Maia Talley Foundation Inc.
