Featuring Alabama EDSers

When I created this website, it was my prayer for God to guide me to the stories of those that needed to be told so that they could be circulated all across Alabama. I am looking for not only the courageous pioneers that lead non-profit organizations, but also the voices of those that overcome some of life’s toughest challenges. When I found Alicia Brightwell through her website, I realized that I found a rare gem—someone who reflects both of these heroic specifications. As the President of Alabama EDSers, she is equipped to serve families who have been affected by Ehlers-Danlos Syndrome, as she has had to walk through this adversity with soldier’s shoes. Her name—Alicia Brightwell—is very fitting as she indeed shines brightly for the One that lives inside of her, Jesus Christ.

 

1.       What are some of the obstacles that you have been faced with as a result of living with Ehlers-Danlos Syndrome?

Everyone has obstacles of a different nature in their life. Mine have a lot to do with my disorder, but I would not say I have more obstacles than a healthy individual.

Some of the obstacles I have to face every day include pain, fatigue, and brain fog, trouble traveling, and trying to balance exercise safely. It is hard for me to not over-do-it when I exercise because my tissues do not hold up to normal stresses and injuries occur without warning. I also have a very high pain tolerance. I think God blessed me with this because He knew I would need it. When I do too much, I either injure myself or become extremely fatigued. Sometimes I get brain fog, or trouble thinking clearly, when my Postural Orthostatic Tachycardia Syndrome (POTS) is not regulated well. Basically, my autonomic nervous system does not have the capabilities to regulate itself at a normal rate.

With my lightheaded spells, fatigue, and injuries, it is hard to plan outings and travel. I avoid social events sometimes because I am not sure if I could make it without getting “sick” in front of everyone. Therefore, I get nervous in front of large crowds sometimes.

God has really shown me patience through all of these experiences. My patience has been extremely challenged when I am recovering from surgery and very limited in activities, and when I have waited months to learn about a new diagnosis I have.

I have also learned how to pray. I used to pray without much thought and meaning on a routine basis because I thought I had everything I needed. Through this journey I have seen the power of prayer with my own eyes and I now purposefully and wholeheartedly establish time in my everyday life to pray forblessings that He has given me.

 

2.       How has your faith in Jesus Christ propelled you forward on this journey?

My faith is the one thing that can get me through this journey. Through God’s grace, He has given me the hope of an eternity without pain one day. My body may be broken on this Earth, but on the new Earth I will not feel pain and I will not be held back by my body anymore.

God has blessed me with a talent to reach out to others, encourage people, and develop genuine friendships with others. God has also given me a passion for serving. The blessings I receive from these spiritual gifts are so rewarding! My journey with EDS has been an avenue God has used to spread His word and His love. I am humbled for what God has done in my life and cannot wait to see what He has planned next!

 

3.       Tell us about your Birmingham support group for EDS and how someone can join it?

Our Birmingham support group reaches out to individuals with EDS and their families all across the state and even in other states in the South. We meet every other month and communicate via email/phone/Facebook between meetings. It is a positive support group where we talk about how to help each other, how our lives are going, and any exciting news to celebrate with each other. The age range at our meetings has been 5-65 years old, so everyone is welcome and we would love to keep growing! To join, contact me at Alicia.Brightwell@alabamaedsers.org.

 

4.       What is your favorite Bible verse and why?

My favorite Bible verse is 2 Samuel 22:33. It is God who arms me with strength and keeps my way secure. (NIV)

This verse helped me remember that God is in control and with me through PT school and my journey with EDS. In the recent years I have had many surgeries while in school. To give me a constant reminder, I took a sharpie and wrote “2 Samuel 22:33” on the back of my hand every morning before school and physical therapy.
 

 

5.       How did you and your husband meet? Describe how God has shaped your marriage for His glory.

We met at Bike Link (a bicycle shop in town). I was a college athlete at the time and unable to run because of my knee. Jon was a bicycle mechanic at the shop. One of my athletic trainers suggested I start cycling and recommended Bike Link to get started. I bought my bike there, but we did not start dating until I was back in town for the Fall semester at BSC. I was asking the guys at Bike Link where I should ride in Birmingham. Jon said, “Leave me your number and I will take you on a ride.” We went on a bike ride and the rest is history.

Jon and I have developed such a strong love for God and each other through our four years of marriage. We married as graduate students, so living on a very low income and trying to manage all of the medical expenses has been a challenge. We had to learn early in our marriage how to truly rely on God and the power of prayer. Through this we have found the true importance in life: faith and love. We also realized that if we stop trying to follow our plans and follow God’s plan for us He will provide everything we need. The importance of family and fellow Christians in our lives has never been more evident.

 

 

6.       How many surgeries have you had? Describe how physical therapy has helped you to recover.

I have had 16 orthopedic surgeries so far and will soon have 2 neurosurgeries. Physical therapy is the only treatment after the surgeries, but it also continuously keeps me going every day. I have been blessed with great surgeons that take care of me. Dr. Lyle Cain, my primary orthopedic surgeon, once told me, “After the surgery is where the hard part begins.” For the surgeries to be a success, you have to rehab correctly and build strength back. This is extremely important within the EDS population. Individuals with EDS recover slower and when their muscles are weak, they are vulnerable to even more injuries.

Physical therapy has been the only form of exercise I was able to do at certain times in my life. I love to exercise, so I always looked forward to physical therapy in those times especially. My current PT, Brian Riddle, is a wonderful Christian therapist with a talent for helping people recover physically, mentally, and spiritually.

My training in physical therapy school is invaluable to not only be able to help others as a therapist one day, but also to help me understand my body better and how to protect it as much as I can. Exercise is medicine.

 

7.       Who are some of the most influential people in your life and why?

My husband Jon is one of the most influential people in my life. He is always there for me and has sacrificed so much to help me get the care I need. He always puts my needs first. Jon is a smart, strong Christian man with the spiritual gift of selflessness and time.

My mother, Sylvia Orrick, is the strongest woman I know. She always thinks of others before herself and will do anything for her family. She taught me about the gospel and has shown me unconditional love. My mother is also affected by EDS, but has never let it slow her down. She has always been there for me, whether it was living with me in the dorm after a surgery or flying across the country to watch me play softball. My father, Tony Orrick, has been a wonderful father and has always been there for me as well. I have been very blessed with a wonderful Christian family through many generations!

Dr. Lyle Cain has influenced my life more than he knows. He has always been there for me and my family. He has gone above and beyond to make sure I receive the care I need. He always has a peace about him, assuring that we will get through whatever challenges we face. Dr. Cain is a humble Christian man whom God has blessed with the ability to help many people, but he always takes time with his patients and truly listens to their concerns. Dr. Cain is a sponsor for Alabama EDSers and an advocate for helping individuals get diagnosed correctly.

Brian Riddle has made a huge impact on our lives. He is a wonderful friend of ours, brother in Christ, and my physical therapist. I first really got to know Brian through physical therapy. I came to Brian at a very hard time in my life, with my shoulders extremely weak and not improving. I was also having a hard time mentally and spiritually. Brian helped me regain my strength in all of these areas. He would remind me at each appointment about God’s strength and that He had a plan for me. Jon and I are truly thankful for his encouraging spirit and taking me “a difficult patient” as a challenge and not giving up on me. I believe God blessed Brian with the spiritual gifts of encouragement and optimism.

Martin and Hallie Wagner have been a large part of our lives. Martin is the pastor that married us, and we have developed a close relationship with both of them. Hallie is truly an amazing woman who gives her time selflessly to others, looking for nothing in return. Hallie and Martin are always there for us whether it is marriage counseling, surgeries, sickness, meals, cleaning, prayers, or just to spend time with us on holidays. Jon and I have grown with God in our marriage with their help. We have an amazing church family and all of them are very important to us!

 

8.       What is your role as the President of Alabama EDSers?

My role as President of the Alabama EDSers is to serve others. I strive to help others with EDS and their families understand the disorder, help them know we are here for them, that God is here for them, and also raise money to help find a cure for EDS. I am striving to improve community awareness of this disorder so that it will be diagnosed sooner and improve the quality of life for those affected.

 

9.       You have a goal of raising $50,000 for the month of May. How can someone donate to your cause?

Individuals interested in supporting our cause can donate directly on our website at www.alabamaedsers.org, at events we are participating in, by shopping through Yesboxx.com--simply choose "Alabama EDSers" from the select a charity drop-down menu, and pick from the many stores available.  

You can also become a sponsor (there is a sponsor letter on our website), by mail to 1810 Heatherbrooke Road, Birmingham, AL 35242, and/or participating in our upcoming fundraising competition in May through CrowdRise.
 

This money will be used to fund research to help find a cure and improve the genetic testing. We will also use part of the money to help individuals with EDS in AL get to the Ehlers-Danlos National Foundation Learning Conference in August in Rhode Island.

 

For more information click on the picture above

10.   What are some “big dreams” that you are believing for God to make a reality?

I believe God is working in our organization to help provide support to families dealing with EDS and to further His kingdom. I am not sure how big we will grow, but I just pray that His will be done.

I also feel led to become a pediatric PT, and believe the Lord is helping me overcome my physical limitations to be a caring, empathetic and knowledgeable PT who He will use to share His word and help others.

Jon and I pray that one day we will have a family. I truly believe that we will be blessed with a family in the future either by pregnancy or adoption and will have the opportunity to care for some of God’s children on loan to us.