Awakened Convos: Derra Howard Chats Epilepsy Awareness, Foundation to Help Those Who Suffer with It
There are about 3.4 million people with epilepsy nationwide: 3 million adults and 470,000 children. Among these who suffer with epilepsy is Derra Howard. But she is definitely not staying silent and is on a mission to bring awareness to epilepsy while helping those who suffer with it find and sustain their employment through the Saving Grace Epilepsy Foundation.
I recently interviewed Derra Howard in an updated interview with Purposely Awakened, where she chatted more on her mission.
The Empress Dee: Can you tell us about yourself and what it is that you do?
Derra Howard: I am a lifestyle influencer and I just started a non-profit called, ‘Saving Grace Epilepsy Foundation’
The Empress Dee: Awesome, I absolutely love it. Now to my understanding you started your foundation in order to bring awareness to others about epilepsy. Can you tell me what epilepsy is and about your journey?
Derra Howard: I did start the foundation in order to bring awareness. I have had epilepsy since I was 10 years old. During the course of my life, I had to find out what epilepsy meant to me and it was important to bring awareness to it. It is a neurological disorder, it is comparable to a computer in the way that a computer sometimes freezes up, it is similar to what happens when your body freezes up from anywhere from 1 to 5 minutes and then it regroups, that is pretty much what happens.
The Empress Dee: What is the cause of epilepsy?
Derra Howard: There are times when you do not know and, in my case, I do not know why I have epilepsy and it is that way for many others. Some people may have hit their head and suffered some sort of trauma.
The Empress Dee: That makes sense and I know that you said that the one thing that really motivated you to bring awareness was that after a while you lost your job because of your epilepsy, Can you tell me a little bit more about that?
Derra Howard: Yes, in 2016 I was teaching, and I was having frequent seizures, I was stressed on the job. They told me that my job was secure, and I thought okay, I am good. But at the end of the year, I lost my job and they told me that they had to let me go. I had to regroup and move out of my apartment, I had to move back home, and I had to figure out what I was going to do. It took me a while because I did not want to do anything that I did not want to do but it was hard.
The Empress Dee: A lot of times when people have certain conditions, they become advocates but on a smaller scale, what made you want to advocate for epilepsy on such a large scale?
Derra Howard: Because I have been fired so many times, just because of my epilepsy. If I have not been fired, then they have tried to get rid of me as soon as I inform them that I have epilepsy. I have talked about this with friends of mine that have it and they too have been fired as a result. It is just the fact that people do not know what epilepsy is…there is always fear of the unknown.
I have also had discussions with people who have had jobs that accommodated them, and I have never experienced that. I want to be with those companies that have an understanding of the disorder and will accommodate us so that we can have a normal life, job…because that is all that we want.
The Empress Dee: So what are some of the things that you found yourself doing in order to gain control over your epilepsy?
Derra Howard: Well, as of now, I am 2 years seizure free.
The Empress Dee: Congratulations!
Derra Howard: Thank you. The main thing that I have been doing is taking my medicine. It does not stop me from having really bad headaches. So, if I feel myself just having one of those, then I just kind of slow it down and relax because they lead to seizure, so I try to slow down, lay down and sleep it off.
The Empress Dee: Do you find it difficult with being on the go so much, because you have all of these different platforms and these different engagements that you have to participate in, so is it difficult for you to find balance when it becomes necessary for you to slow down?
Derra Howard: It was difficult prior to Covid-19 but now I am always at home and I can do things from home. Right now, I am trying to figure out a regular routine for myself.
The Empress Dee: Absolutely. Can you please tell me more about the Saving Grace Epilepsy Foundation?
Derra Howard: Our mission for the Saving Grace Epilepsy Foundation is to help combat job discrimination. We want to normalize not only having a job for those who have epilepsy but for them to be able to keep their job. We want to assist with job placement and we also want to help to promote seizure safety because a lot of people do not know what seizure safety is. On a national level as well as universally, we want people to know what to do when they see that someone is having a seizure; that person needs to be put on their side, look to see if they have a medical bracelet and if the seizure lasts longer than 5 minutes, then you need to call the ambulance.
We are going to conduct seizure safety courses, provide assistance with medication and we hope to branch out to giving out scholarships to those who have epilepsy.
The Empress Dee: That is so beautiful! I have never heard anything like this before and I am so glad that you are able to speak on it because before conducting this interview, it made me have to do my research because I did not know anything about epilepsy. So, I really do appreciate you for bringing awareness to this disorder because a lot of people need to know about it.
You will be having a #OneMileForEpilepsyChallenge; can you tell me more about it and how our viewers can get involved?
Derra Howard: We wanted to figure out virtually, something that we could do to bring awareness. I was discussing this with a friend of mine, and they suggested that we do something involving fitness and health because our health is important so that we can combat the epileptic seizures. So we decided to do a #OneMileForEpilepsyChallenge and that is pretty much how that came about.
Because of Covid-19, I am just involving my family and friends. We are going to do the one mile, do the hashtags and hopefully we will be able to raise some money for it. Here are some facts about epilepsy & why #onemileforepilepsychallenge is important:
1 in 10 will have a seizure in their lifetime
1 in 26 people will be diagnosed with epilepsy in the United States.
Epilepsy is the fourth most common neurological disorder in the United States.
The Empress Dee: Nice, that is awesome! So, speaking of raising money, while bringing awareness, tell me how our viewers can donate?
Derra Howard: You can make your donations at www.sgepilepsyfdn.org
The Empress Dee: Perfect, I absolutely love it and I am so excited. If you do not mind me asking this, are you able to remember some of your lowest points while dealing with epilepsy and how did you overcome them?
Derra Howard: OMG, yes! It was 2018 and I was taken off a medication which was supposed to transition me to be put on another one and I never quite transitioned off the medication. I was very fragile to the point where I was unable to get angry or anxious and I kept having seizures every time that I got upset and on this particular day, I was mad the whole day so I was preparing myself because I knew that I was going to have a seizure. Although I was prepared, I did not have a seizure the whole day. I was still feeling anxious and I thought that maybe I was not going to have a seizure.
Later on that night, around midnight…I went into a seizure and my seizure had changed, I just fell out and my parents were asleep, and they heard this big thump. My mother found me on the ground, I had a big knot on my head, a busted lip, black eyes, and my nose was swollen. My parents put me in the bed and I woke up with ice packs all over me and when I went to the bathroom, I almost screamed because I did not recognize myself and that was the lowest point and I just wanted to be put back on the medication. From that seizure, I had a concussion.
I could not get on the internet or watch television…anytime that I looked at bright lights, it would hurt me. I had to stay away from all of that so that my brain could heal.
The Empress Dee: I am sure that having to deal with something like that could cause some people to become depressed and with people who are depressed mostly because of their condition and not really knowing how to handle it, what advice would you give them?
Derra Howard: I would tell them to not give up. During that time, I was so prayed up. I was like God please keep me alive. I was scared because every day I felt so weak. Epilepsy is a real thing and people can die from it, in having the seizures and the harm that can be caused when you fall out. I would say that if you are depressed reach out to a mental health professional/support team. I would also suggest that you stay in prayer because the only thing that kept me was God.
The Empress Dee: Was your support system at that time comprised of only your family or did you have support from your friends as well during that time?
Derra Howard: I think that my friends were supportive but from a distance. They really did not know what to do. I had one friend; she was very afraid to the point that we kind of lost contact. During this time she was scared of me, I think that she believed that I was doing this for attention. We eventually reconnected and we were able to talk about it.
The Empress Dee: On the opposite end of the spectrum what would you say were some of your most triumphant moments?
Derra Howard: I think it has been that through all of this I kept going. Even when I was really sick, I still went to my photo shoots despite the fact that I was 100%, well not even 50% half the time. I still met up with my blogger friends once a month because I felt that it was an outing that I needed. I maintained the routine that I had and that kept me social and motivated.
The Empress Dee: It sounds like it brought you a sense of normalcy.
Derra Howard: Yes, because for about 6 to 7 months I was stuck in the house and I could not drive so it was different and my parents, they are older, and they understand epilepsy to a certain degree but they do not understand how I felt as a grown woman not able to do things on my own and the seizures changed so much so that I did not even trust myself. I did not want to be by myself because at this point whenever I did have a seizure I would just fall out.
The Empress Dee: So, how are things now, are you able to be independent and live on your own?
Derra Howard: I am but I do not yet. I am in grad school right now and so I will wait until I graduate in the spring and then I will go.
The Empress Dee: Absolutely, that is beautiful! I am so glad to hear that you have not had a seizure in a while because I can only imagine the type of stress that has put on you. Especially with all the things that you have going on and you would think that your body would be stressed during this time when you have your foundation, your business. and things like that.
I do know that through your foundation and your many other platforms that you are able to connect with epileptic people all over the world, how does that make you feel?
Derra Howard: It makes me feel really good. I believe that I found the power within myself to better understand my epilepsy. I started that journey in 2011 on Twitter just talking about my condition and they helped me…in fact we helped each other to understand what it meant to have epilepsy. I then created an Instagram and I told them that I was moving to Instagram and they moved over to Instagram too and we all just created a community.
The Empress Dee: That is awesome, and have you made any personal connections with anyone on-line?
Derra Howard: Yes, with a lot of them. With one of them we will be doing an Instagram live together, she gives me so much advice. She has a non-profit and she does amazing things. A lot of my epilepsy friends have non-profits so that they can help other people. I think it is the reason that I got into that realm too and once I made friends with them, I thought I am going to do this too because this is amazing.
The Empress Dee: I love that you have created a bond with these people. that is so amazing. What is the ultimate vision that you have for yourself and your foundation?
Derra Howard: The ultimate vision that I have for myself is to keep growing and to stay healthy and for my foundation, I want it to grow and I want to continue helping people. That is the ultimate vision because I have found my passion in helping people. I know how it feels to be discriminated against on your job and I just want to help others and I want to implement seizure safety out in the world and make sure that it is included in every conversation.
The Empress Dee: I know that some parents might have epileptic children and as you stated before your parents understood from a certain perspective and had some knowledge about your condition and yet they were not able to understand how you felt.
What advice would you give to the parents of epileptic children?
Derra Howard: That your children can do anything and that you should not be afraid to let them and remember that they are normal. Try your best to understand and whatever it is that you do not understand, read, do your research, and take the time to talk to your children.
The Empress Dee: That is so beautiful! Please tell us again where we can find you and give us the website for your foundation so that people know where they can go to donate.
Derra Howard: You can find me on Instagram @sgepilepsyfdn and for the website it is www.sgepilepsyfdn.org and you will able to make your donations there.
The Empress Dee: Awesome! Thank you so much for all of the information and awareness that you gave us regarding epilepsy. We really do appreciate you and I wish you the best of luck on all of your future ventures.
Derra Howard: Thank you so much.
The Empress Dee: Of course and you have a wonderful day.