Last year Forrest was featured in this article on our blog. He wanted to share more of his story.
My brother and I, two and a half years ago, were diagnosed with a new genetic strand of what is known as an “Act A Two” disorder. This genetic disorder causes our smooth muscle and connective tissue to deteriorate. We have undergone an emergency open heart surgery to replace our aorta.
Since then, our condition has only deteriorated more. It is very aggressive.
Due to this we have needed multiple stent surgeries and need our aorta in our abdomen replaced. My brother’s lower replacement paralyzed him and hopefully it won’t do the same to me. Our condition has only appeared in our aorta and arteries right now, do to the blood pressure in them. Once they surface, they can grow larger and eventually cause aneurysms and dissections.
Later on down the road we could have the same deterioration in our veins digestive issues, organ failure and worse. No one knows or can predict our future medically. So far the only way to fix the major issues are surgically. The minor issues include massive blood clots, stroke, blood pressure issues such as POTS (postural orthostatic tachycardia syndrome). I wrote this because despite all of this I am positive and I will fight!
I’m not going down easily and I want to spread the word of my condition and of other rare ones. If you know someone with an “Act A Two” Genetic Mutation please contact me or have them do so. I can help give them the information I have so far. For all the families with rare conditions I feel your pain and if you think I can help in any way let me know! I would love to impact the lives of others in the rare community.