To inspire the minds and assuage the lives of individuals with Sickle Cell Disease.
Choose life. With every choice and every decision you choose or reject your rightful place in the universe. I am supposed to be beautiful, healthy, rich, inspiring to others, and happy. In order to be all these things I must choose multiple times per day. So I wake up this morning and choose life, my life, my rightful life that I am due from birth. I hope you do the same.
About the Founder
Inspiring Minds was founded in 2013 by Bronwyn Scott, the following is her story:
I am a Real Estate Agent that currently resides in Maryland. I was born and raised in New Jersey in 1978. Born with Sickle Cell disease I was given a life expectancy to my teen years. When my sister was born with sickle cell disease, my parents were told she would be "crippled by 5 and dead by 10". Five years later when I was born, the life expectancy of a Sickler increased to the teen years.
As a Sickler, I had a very painful childhood. I would have about 3 crisis every two months that would last 3-14 days each. Because of this, I never missed less than 48 days of school each year. However, I was always able to catch up with my school work and maintained a decent grade point average.
A typical crisis for me would begin with an overall tightness throughout my body. Then, anywhere from 2 minutes to 2 hours later the crisis would blow up to its full crippling effect. I felt as though I was being beaten by huge cave men with big spiked clubs. They keep hitting me and just won’t stop. I would literally cry for the first 24 to 72 hours of a crisis with very little relief from the potent anti-pain medication of Percocet or Tylenol 3, which were the drugs prescribed to me at that time. I would take it every 3-4 hours and still only received 10-20 minutes of relief. The debilitating pain went on for the first 1-3 days and then the pain would gradually decrease a bit so that I was able to sleep in longer increments. A vivid memory of these crisis is asking my mother to kill me. I would beg her to please put me out of my misery and just kill me. At the time I was saying it, I was very serious because it seemed the only way to relieve my agony; the pain was so bad, I couldn’t fathom why I would want to feel it again, which I knew, that no matter when I got better, I would always get sick again... I hated my life.
But, it didn’t matter, because I believed that God put me here and only God could take me from here. So since I was here, I would make the best of it. I was so unhappy but still I fought my disease every step of the way. I tried to talk my way out of a crisis. I would never admit to being sick until I literally couldn’t walk. Mind over matter. I tried all the time to tell myself that I wasn’t sick, I don’t feel pain. I would walk around my room in circles for hours saying to myself "I will not go into a crisis". Sometimes it worked, and sometimes I ended up on the floor crying.
In high school, the most amazing thing happen. I started taking a drug called Hydroxyurea(my saving grace!) The 'best thing since sliced bread' in my world. My crisis decreased in both frequency and intensity. I used to say (and still do) that I just want to know what it would be like to be normal. To wake up without being in or worrying about being in pain. To be able to get cold, or over tired without fearing a crisis coming on and having to spend the next week screaming in pain.
After high school and before the age of 25 I had the best of life. Thanks to Hydroxyurea I had only 3-6 major crisis per year which generally lasted 3-7 days per occurrence. This was such a huge difference. For the first time in life, I dared to plan. Then, during this time frame I further discovered the healing properties of IV therapy. When I started getting IV therapy at least once a month my crisis decreased to 2-4 crisis per year and lasted maybe 2-5 days per occurrence. My life was just getting better and better. I could work, I could plan, I could handle more pain as an adult. I was living for the first time in my life.
Growing up with sickle Cell you kind of think that after suffering with such a painful and terrible disease you couldn’t possibly have anything else go wrong with you. Little did I know, there were oh so many more facets of Sickle Cell. There are many major complications that come along with the disease. Having so many crisis as a child deprived my bones and organs of oxygen which, for me, caused major necrosis of almost every major joint and some minor joints in my body. At the age of 26 I was diagnosed with Severe Rheumatoid arthritis. This, almost broke me. The pain was different. Nothing like Sickle Cell pain, in comparison sickle cell was a punch and RA was a pinch. However, even though that punch carries so much more immediate severe pain, that pinch never went away. It is a pain I have to deal with every day on top of the sickle pain and crisis.
Every Sickler has different pain. Some of us have never experienced a crisis so severe. Some of us have pain every single day. All of us have pain; most of us have another disease or other serious medical problems, caused by the sickle cell crisis.
While people take for granted the ability to get up, take a shower, and get dressed. Things for which I am grateful. In a crisis, none of those things can happen. I understand how hard it is to believe that I can be at a concert one night and the next day I can’t even dress myself. Well, that’s how it happens, and you can’t see a thing except the pain in my eyes or maybe hear it in my voice. I may not be swollen, there may be no broken bones or lacerations on my body, but boy oh boy does it feel that way. I describe sickle cell pain as someone hitting me with a spiked club over and over and over again. They won’t stop and I can’t get used to the piercing pain.
So my story is that I have Sickle Cell disease and Severe Rheumatoid arthritis. That, I deal with every day. I have had pulmonary embolisms (very common for sticklers) which I am still taking Coumadin for every day. I had my gallbladder (very common for sicklers) and appendix removed. I have a port in my arm ( very common for sicklers) due to the damage to my veins over the years. I have major necrosis in almost every major joint In my body. Both hips, both shoulders, both ankles, both wrists. I have had both hips replaced(very common for sicklers) with seven surgeries. Five surgeries(not common for anyone) on one hip and two on the other. I have a dislocated wrist, more than 8 infarctions (dead bone) and a collapsed arch in my right foot. Necrosis of the left shoulder so severe that I would need multiple bone graphs in order to get a shoulder replacement. Blah blah blah. What this means is that I am in pain 24 hours a day.
This is just a snibbit of some of what one person with sickle cell goes through. Please read the testimonies of other sicklers so that you can understand the struggle.As an individual living with Sickle Cell Disease I know first hand the devastating impact in can have on one's quality of life.
Everyone with Sickle Cell Disease has a different experience however those are experiences are most often similarly shaped by severe pain, hospitalizations, major surgeries, absences from major life events, and inconsistent employment histories.
Founded in 2013, Inspiring More Minds (IMM) set out to find ways to improve the daily lives of individuals with Sickle Cell Disease (SCD). Since that time we have found that financially assisting them with their educational, entrepreneurial and personal goals. We also found that local and online community support systems assist in improving the daily lives of individuals with SCD.
Due to frequent crises (episodes of pain) SCD makes success through conventional education and employment very difficult to achieve. When in a crisis, the pain is such that working, walking and sometimes even talking can become overwhelming, if not impossible tasks.
As an inherited disease obtained at birth, individuals with SCD had no choice in getting this disease. The only thing they can do is deal with the pain and the many other complications that often accompany this SCD. Knowing that you are not alone in the way you feel can make the biggest difference in one’s life. That is where our network of people through the website and blogs comes into play. This Sickle Cell community will help all patients, caregivers, and others, deal with the emotional impact that accompanies the disease.
A sickle cell crisis can come on in a matter of minutes and completely stop your life. An individual with SCD can go from having a productive school or work day to being helpless in the hospital within a matter of hours. Your life is put on hold which often leads to many setbacks. When this happens without financial and emotional support the outcome is almost always devastating. IMM is here to provide financial and emotional support. The IMM website educates and informs readers about SCD and provides an online environment for honest discourse between patients, care givers and the community. After all, “it takes a village”.
In collaboration with schools, businesses, and the community, we raise funds for Inspiring More Minds. In doing so, IMM are able to be that portal of assistance that is family-like in local areas. We reach out to patients when they are in the hospital in order to make sure they are as comfortable as possible and that their goals are still being accomplished. The more we raise, the bigger and better of a family support system we will become. For instance, when a person with SCD goes to the hospital without a support system and has a child that needs to go to school, get picked up from school, get help with their homework, etc., life gets even more difficult. So with your help we will be able to put these types of helpful and necessary resources into action.
I am a strong believer that nobody can do it all by themselves. Everyone needs help. If not for the support and assistance from my own family I would not be where I am today. IMM is family for those who need us and a portal of outreach and help for those who care and want to make a difference in this world.