Sarah Forsman, a Marketing and Psychology student from Gloucester County, is an advocate for those who have Alpha-Mannosidosis and Craniosynostosis. Her experience with the following conditions have provided Sarah with a renewed perspective — one that influences her outreach and prospective goals. In today’s article, Sarah discusses her story, her involvement across organizations, and her use of writing as a platform to champion others.
Why did you choose to study marketing and psychology?
I came to Rowan after I went to Rowan College of South Jersey. I got my associate degree in business administration, and I didn’t know what I wanted to do, so I chose marketing because it’s versatile.
When I entered my senior year, I realized that I didn’t like marketing, but I had all of these credits. I prayed and thought about it until I came to the conclusion of psychology. This is something that I am interested in learning more about and potentially doing in the future because it has helped me. I chose psychology so if I potentially got a master’s in this area, I would have all the core classes.
What internship are you involved in and what are some responsibilities in this position?
Currently, I am interning for Craniofacial Connection. They are a brand new organization. I’ve been in the craniofacial world for some time now because I was diagnosed with Craniosynostosis and I had surgery when I was a year and a half. The person that I am interning for, she worked for the children’s hospital when I had my surgery. She was starting this new organization and she needed help with marketing. Right now, we’re focusing on starting social media sites like Facebook, Instagram, and LinkedIn. We are also working to develop a newsletter as well as updating her website.
Can you share your story about Alpha-Mannosidosis and Craniosynostosis?
I was born with Alpha-Mannosidosis. It’s a rare genetic disease that affects every single cell in the body. My body was missing one enzyme and that was the alpha-mannosidase enzyme. By missing that enzyme, it really affects every single part of the body. It affects my bones, brain, and muscles. If you think of something, it’s probably most likely affected by this rare disease. I’ve had a lot of challenges when I was younger. I had moderate hearing loss so I had hearing aids. My muscles were very weak so I had trouble walking. I had ataxia or balance issues. I had a lot of cognitive issues and processing issues. I also have issues with my memory so I don’t remember anything from when I was younger. Even things that were two or three years ago are hard for me to remember, so I always say that I have a blank slate for everything!
With Alpha-Mannosidosis, I do have a treatment option, but it’s not technically a cure. I had a bone marrow transplant when I was four and a half. Transplants are very risky because of the chemo drugs that are used. The surgery really helped my life because if I didn’t have that bone marrow transplant, I would be here in a wheelchair, barely communicating, and having so many issues because it is a degenerative disease.
What are some of the challenges that followed after your bone marrow transplant?
I don’t really have a lot of challenges that were from the actual transplant. We’ve watched a lot of the different aspects that it can affect, and everything is looking pretty good right now. The bone marrow transplant stops the disease from progressing at that stage so anything that happened is thought to have stopped where it was. I still have challenges with my memory, cognitive issues, and brain issues in general. I have a lot of good muscles now and after the bone marrow transplant my hearing came back. I don’t have hearing aids now, which is super cool!
The biggest thing is probably my brain because it really affects everyday life. My life doesn’t look the same as a typical person that is my age because of what I’m experiencing with my brain challenges. That means I don’t have a job, I don’t drive, I go to school part-time, and I’m doing neurofeedback therapy three times a week. My schedule looks a lot different, but I’m always just trying to remind myself to stay in the moment and be ok with where I am because of the things that I’ve gone through.
How do you advocate for others who may be experiencing similar challenges?
I’m involved with a lot of different things because I don’t have a job, so it can help me be in all of these different areas. A lot of what I do, I do on social media. Parents who have kids that are being diagnosed with Alpha-Mannosidosis are reaching out to me because they see that I have Alpha-Mannosidosis on my social media pages. It’s so cool because they’re reaching out to me and we’re getting on a Zoom call to talk. We’re connecting with families that are across the world like Brazil and Serbia. The one girl that we connected with recently had a bone marrow transplant to stop the disease from progressing. A lot of my advocating happens on social media because there’s not that many people that have this rare disease alone in the United States.
As a board member of International Society for Mannosidosis and Related Diseases (ISMRD), what is the mission of the organization and your responsibilities?
ISMRD is the International Society for Mannosidosis and Related Diseases. It’s a family support for all of the different rare diseases that are within this organization. We’re researching a lot because we work with scientists who are looking for cures for these nine glycoprotein rare diseases. We’re on a mission to really try and get the patients connected with the scientists, doctors, and similar networks. I have been on the board for a little under a year. I am working on sending emails to the family to update them on things that are happening within the organization or any opportunities that are happening in the rare disease world. I am also going to be helping them with their social media presence on Instagram because they don’t have Instagram. The board is made up of parents of these kids who have these rare diseases, so there’s not many younger people on the board.
How do you use your interest in writing as an outlet and a platform for your goals?
I absolutely love writing! It’s funny because when I was in elementary school, I always wanted to be a writer one day. My mom told me to go for it, even though I had challenges in the writing classes because that was one of the challenges I had with what I was born with. Writing was not my strong suit whatsoever, so I love that I am able to write and share my journey. I write in a way that feels like I’m talking to you and that’s really what I want it to be like. I want to have a conversation with someone because we live in a world that is so fast-paced and no one is sitting down and having a conversation about what they are going through or what is happening in their life. I just want to help to inspire people, even if it’s just one person that reads my blog. I just want to share some hope, joy, and peace in their life.
What is the idea behind the title of your blog, Achieve the Impossible Today?
I am a Christian, and in the Bible it says in Mark 10:27 by Jesus: “With men it is impossible, but not with God: for with God all things are possible.” I grew up Catholic, but I stopped going to church. I knew God when I was younger, but it wasn’t like I know him now. In the past four years of knowing God and diving into my relationship with Jesus, he’s just shown me that anything is possible. The whole thing is I just want to share stories of doing the impossible because everything that I’m doing today is considered impossible.
Who do you hope to reach with your blog?
Anyone — I would love for anyone who’s going through a hard season to read my blog and find that hope that they will get through this. It’s also for parents who are just finding out that their kid has Alpha-Mannosidosis because there’s not much out there. I just want to raise awareness of the disease.
What are your goals for the blog and your future?
The main theme that I wish to go after is just to inspire people in whatever it may be that I’m doing.
Like what you see?
Story by:
Jessica Nguyen, elementary education and literacy studies graduate
Photos by:
Harley Sarmiento, senior sports communication and media major