MBTN, Inc
"Power of the CollectivE"
"ADDRESSING Women's Health"
"Bridging the HeALthcarE DividE"
There is significant unknown information, research, or other forms of reporting as to the psycho-social needs, functioning, and access to services for minority meningioma brain tumor survivors. Recent studies have reported that more than 50% of patients with meningiomas experience impaired cognition and worse quality of life. A third of patients diagnosed with benign meningiomas had stable or worsening neurological symptoms following surgery.
Two-thirds suffered long-term neurological sequelae, and one-quarter was chronically disabled (Fonkem, 2016).
Other studies have shown that preexisting conditions such as hypertension, diabetes mellitus, and epilepsy may contribute to meningioma development and progression (van Alkemade et al., 2012), with two of the three (hypertension and diabetes mellitus) conditions being prevalent in the African American population.
There are consistent and continued gaps in empirical research, formal information gathering, or structured reporting on and about the psycho-social lived experiences of minority meningioma brain tumor survivors (Evans Coleman, 2019).
Some of us with meningioma brain tumors find that the discourse or communications that surgery and therapeutics bring about cures, at the very least, are rather disconcerting. Promoting such information is rooted in misconception about living with the disease as if it's a sudden acute illness, rather than an affirmed disability (Evans Coleman, 2020).
We Are Survivors/Thrivers
SURVIVORS/THRIVERS Testimonials
Survivor/Thriver #1:
"I worked at my previous job for almost 18 years. I learned I had a brain tumor last year and had surgery. My doctor released me 6 weeks after and I went back to work, only to find my hours were taken away as well as my responsibilities. The owner put her own restrictions on me, she said out of concern. So I got released again from the doctor. No change at work. Needless to say no hours, no money, equaled stress, and anxiety for me. I went to the doctor, for tremors and was told she said to take the next day off as well. She called and fired me that night, said nothing personal".
Survivor/Thriver #2:
"I was first diagnosed with a Grade 1 Meningioma on December 1, 2015 (what a shocker). I underwent surgery two weeks later where they pronounced me benign meningioma free. I was re-diagnosed in March 2018 (via MRI screening) and had my 2nd surgery in July 2018. Started Radiation Treatment Therapy, in October-November 2018, 31 days of radiation. It was a thrill to ring the bell when I finished my treatment. Your whole treatment team actually comes out to witness your accomplishment".
"I went to my 1st brain seminar in September 2019 where I met (for the 1st time) other meningioma survivors, and Dr. Jo, Yeah! Since then, I've had two successful MRI's August 2019 and February 2020 (shows no regrowth)".
"The shock of the diagnosis can be daunting but, the survival aspect is so much better. As I say: It is What it is, Till it’s Not! Breathe, it will be okay. Survival is key first, last, and always. The will to live has to be just as strong. Proud Meningioma Survivor".
Survivor/Thriver #3:
"I'm 18 and I've had two brain surgeries, one in 2012 and the other 2013. My second brain tumor was located in the same place, and lately, I've had issues remembering conversations and little things. It's not a lot, but I forget things I've said and things I've heard. I also can't concentrate on any conversation. They have to repeat one thing a few times for me to understand".
Survivor/Thriver #4:
"I had a tumour removed in June 2013. I started to have problems with my memory before I was diagnosed with a tumour. It was located on the left-hand side of my head. I had been told it will take up to eighteen months before I start to feel better. But I'm finding even after having the tumour removed my memory problems are just as before pre-operation. I get very frustrated when I cannot remember simple things. Or I get mid-way through a sentence and cannot remember what I was saying. I have to write things down. On scraps of paper. I often find love ones will tell me they have answered my question but I cannot remember asking in the first place".
Dr Ekokobe Fonkem, DO, Neurologist/Neuro-Oncologist (2nd right) and Meningioma Survivors/Thrivers
