I am a middle-aged, African-American woman, born and raised in New Jersey. After years of education, years of working and raising a fantastic daughter, I began preparing to "live the good life...enjoy the fruits of my labor."  Not to mention that, my first grandchild was on the way and I was ecstatic! When low and behold, a few years ago, I began to notice that physical issues I experienced throughout the past 15 years or more had resurfaced. But this time, it was with a vengeance. After going from doctor to doctor, emergency rooms, Urgent Care facilities, having a series of tests done and so forth and so on, I was given devastating news. I will never forget the words; "You have more lesions on your brain than we can count, they're active...many are old and that means that you have Multiple Sclerosis, which you have had for a long time." Needless to say, I almost hit the floor.

 

My first question for the doctor was "why did it take such a long time to diagnose me with this disease?" The answer was "it is not typical for African-Americans to get this disease." It crushed my spirit, it changed my life's plans and left me feeling hopeless. Not knowing how my family would take it, I felt I better get it together quickly and research what this disease is all about and how I could help myself. I began to list questions to ask my doctor, research how I could have possibly gotten this disease, what the medication subscribed was, how I could get help to understand the disease and why most of the people that I found information about were only Caucasians? "Where are people who look like me with this disease" is what I thought.

 

Despite researching MS for more than a year, I found very little information that pertained to African-Americans who are living with MS. Even when I attended support groups, physical therapy, infusion appointments, volunteered with MS organizations, etc., I can count on one hand the number of African-Americans  I encountered with MS. Not because we don't get it, but because it is not expected, we are not getting diagnosed and no one talks about it. We are too often not included in conversations about MS, studies and/or clinical trials, etc. Nor are we abreast of many educational tools to help us navigate through living with this disease.

 

While I am blessed with a wonderful support system (a phenomenal husband, daughter, son-in-law and great family & friends) and I appreciate all that they do for me, I still have so many unaddressed needs. Sometimes people living with MS do not have enough energy to get out of bed and I know that we definitely do not have enough energy to constantly research information about MS. That's why I decided to develop a place to find some of the resources that will help people living with MS and their caregivers (especially African-Americans).

 

Although MS has made life a tough journey, it certainly has made me a stronger person. I take one day at a time and look for new opportunities to share information and my skills, even with limitations and permanent disabilities. I'm constantly helping others, enjoying my wonderful grandsons (yes, there are two now...yipppeee) and I do what I can, as best I can, when I can in spite of MS. There is no sense in having a pity party. It is what it is. God will take care of me no matter what.

 

Hopefully my story will inspire you to fight with all you have and to live your best life, as best you can. Be well and keep fighting, keep pushing! Your life means more than your diagnosis of MS.