Shabreon Howard

@shabreon_howard | contributor
I am a 31 year old single mother living with sickle cell anemia. As an advocate. I work hard to bring more attention to those living with this genetic disorder. I was 7 when I lost my mother to the same illness I am fighting. my life has been a rollercoaster of events that made me the strong person I am today. I want to help people.

How Sickle Cell and Social Justice Go Together

Pain is the most common symptom for a person living with sickle cell disease. However, it is often the first thing people don’t believe patients about. Some medical professionals are convinced that the pain is all a delusional cry for attention and pain medication. I believe they are clearly not qualified to make that diagnosis solely based on coming into a hospital room and judging how many tears a sickle cell disease patient does or does not shed. I believe it is much deeper than just thinking of people with sickle cell as “drug seekers.” In a conversation with a psychologist, who also lives with sickle cell, I learned that some medical professionals are told not to qualify sickle cell patients as a life worth saving, because some doctors believe most sickle cell patients are on disability and considered a waste of space for needing the state’s assistance. This is a social injustice. How can we be judged for an illness we were born with? Sickle cell patients didn’t ask for this, it was the life they were given. Be that as it may, it is the life we have that more than qualifies us to be our own boss. Many living with sickle cell have a hard time maintaining a job when they go to work for companies, because there are very few people willing to understand the two weeks you need off to get treatment at the hospital and the other week to recover from pain and withdrawal from pain medications. This is why some choose entrepreneurship as a career path. Patients are tired of the misconception that they are not worth the trouble of being treated like normal human beings. Another issue is the superficial expectation of what people consider a serious illness.“You don’t look sick.” How many times have patients struggling with sickle cell heard those heart-dropping words? This is an invisible illness and a silent killer to some because of those expectations to look exactly how they feel we should. On the other hand, sickle cell patients should also look at the role they play. There are some sickle cell patients who are judged based on the actions of others. Although it is not acceptable to be treated like the last patient who left a bad impression on the medical staff, the entitlement of some patients that come into the hospitals may also contribute to the judgment by the medical staff. Of course, this is just based on previous experiences with being treated unfairly, but this illness is not well known to all professionals. When they ask for a patient’s help or for an opinion to better understand the illness they are faced with treating, it would help to educate them or connect them with an advocate or doctor who can help achieve a better understanding of treatment for all patients they come into contact with who are dealing with this condition. Being dismissive of those who are uneducated only creates a bigger problem. The reoccurring issue of bias against patients will persist. The prejudice goes both ways in some cases. A patient may think the problem is a race issue instead of a miscommunication that sometimes can be resolved with compromise. The problem with some medical professionals is their belief that sickle cell patients are threats to their medical licenses instead of people who can provide knowledge about the disease. Not only the tone about sickle cell awareness, but the conversation itself needs to change altogether. Sickle cell patients must first start by educating and empowering themselves. Acknowledge what the problem is and if you are able to help be the solution. Patients know what hospitals are actually hot zones, meaning they more than likely will receive less than adequate care. If you lack the time, patience or general connections to make the necessary changes at that specific hospital, then change the hospital you choose. Travel a little further to a hospital you know will at least follow the NIH guidelines. If you are not aware of the NIH guidelines please make sure you review them and print them for your records. Sickle cell patients should also be aware of their hospital’s patients’ rights and responsibilities, so they are able to identify when they are being treated above or below hospital protocol. Sometimes a patient can do all these things and still run into problems beyond their control. Shatter those limitations and the preconceptions of medical professionals, and there is hope for change.

Community Voices
Community Voices

Sickle Cell and social injustice: How they go hand in hand.

<p>Sickle Cell and social injustice: How they go hand in hand.</p>
Community Voices

The Birth of a Warrior

I am a 29 year old single mother of a five year old little princess. I love the fact that I was given an unconditional love that I was taken from me at such a young age. I have been through so much over the years starting with the loss of my parents and grandparents.

My mom was a sickle cell warrior who struggled more than I could have ever imagined at her age. I think we all have our own personal walk with this disease but I saw a lot of similarities. The stress of life of having to maintain and be as normal as possible especially with a small child. I would always question why would my mom brought me in this world if she was just going to leave me? I resented her for leaving me. Not even passing on this serious illness. I never blamed her for that. I just wanted her. I felt robbed of one of the best things that has ever happened to me. My mom was always so great.

A great part of my life I spent covering my true feelings about her death because I did not allow my own time to mourn after I lost her. My grandmother who was my everything was always my reason to stay so strong and repress my sadness. Seeing her heartbreak after losing her child and what it did to her mentally and emotionally, made me feel like a physical representation of torture for her. She had just lost her daughter whom she fought so hard to keep here. I was the repeat of torture from hospital visits to doctors offices, to pain crisis. She had to do it all over again.

It made me push her away when I was sick because I felt her pain so much I didn’t want to be the one that sent her over the edge. I had to learn at an early age how to advocate for myself and learn how to be alone. I by no means had it all together when I was young but it just made me the advocate I am today. I am very opinionated when it comes to my care. I just want to be treated fairly. So sometimes I have to be willing to be uncompromising and fight the ignorant for better treatment in such a professional manner that usually leaves peoples head spinning. I am a very fun and loving person and I carry that everywhere I go. Especially in the hospital. I have a little girl to live for so I do just that.

Last year was one of the worst ones of my life because I had to give up my place and that left me and my daughter homeless going from place to place for over ten months. As a result of that I moved from California to El Paso Texas so that I can provide a stable home and living environment for me and my daughter. I don’t regret my decision at all because, I was unhappy and so was my child. It was affecting my quality of life. I mean to have a lot to live for so the choice for me was simple. I don’t regret it. I refuse to let anything stop me from achieving my goals not my finances not my family or lack thereof, not even my SickleCellDisease will stop me from bringing more awareness using my passions and gifts. I write and have been writing since my mother passed when I was seven. I was ten when I decided I wanted to follow my heart and be a writer. It was my grandmother who bought me my first typewriter that Christmas after telling her my plans. She always believed in me. She is one of the main reasons why I can’t just give up. Making and creating visual art that people can watch and relate to is a close second love of mine and I make sure I use my gifts for the greater good. I lost everything but I know it’s all for a greater purpose. I still have my integrity, love and compassion and that’s all that truly matters.

My daughter brings so much of what’s right out of me. She is amazing. She is my inspiration my rainbow miracle baby that I was blessed with. She wants to grow up to be a doctor and is very serious about it. I could only imagine the people she will touch and heal after having a mom like me so heavily involved in sickle cell advocacy. She is so proud every time she gets to see me in action at an event, whether I am speaking, hosting, or doing photography. I am glad I have her to share this journey with, I mean receiving my first sickle cell award last year and the very first Film award for the Axis advocacy SCD Art and Film Festival made us both excited for our future in the sickle cell community. There is so much more to me. We really barely scratched the surface but I am afraid we don’t have the time for a hundred page short story about my life. So I will leave you with this. Never be afraid to outshine your illness. It is only crippling if you let it be. #SickleCellDisease #SickleCellWarrior #RareDisease

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