Local Woman Raising Awareness of Rare Disease

It was the Summer of 2009. She was a student at Michigan State University, and was in and out of the hospital with stomach pains. Each visit to the hospital showed lower blood counts than the last. She was tired and weak, and doctors were struggling to determine the cause.

It was near the end of one weeklong stay in the hospital when the blood work sent to the Mayo Clinic finally came back with an answer. She had Paroxysmal Nocturnal Hemoglobinuria, or PNH. An extremely rare bone marrow disorder that causes havoc on a person’s red blood cells.

Finally, Brianne Sandborn, better known as Breezy, had a name for what she was fighting, and she was bound and determined to beat it.

The stomach pains were actually due to a blood clot in her liver caused by the disease. Once the doctors switched the treatment to blood thinners, folic acid and steroids, Breezy was able to leave the hospital. The following week a specialist added a relatively new drug called Soliris to the treatment program.

According to Breezy, a graduate of Portland High School, and current teacher at Portland Alternative Education, “Soliris acts as a complement for the protein that I lack that reduces red blood cell destruction, and could eventually lead to needing a blood transfusion or bone marrow transplant. This is an IV treatment that I have to be on for the rest of my life, it is administered every 2 weeks at my hematologist office.”

Once a treatment plan was in place, Breezy made the decision to work towards building awareness of this rare disease. In October of 2014, she presented at a luncheon in Chicago for PNH patients and caregivers.

Later that same year, she was invited on a television show called “Access Health” which was on Lifetime.

According to Breezy, “It is a half hour program and for this episode they invited a PNH specialist to talk about PNH and then myself and one other person who are living with PNH. My dad and I flew to Miami, Florida, on a Friday, shot on Saturday and were home on Sunday. I felt like a celebrity. I was able to speak about my experiences with before and after diagnosis, being diagnosed and how I am living my life now. The only thing I could not talk about was the drug that I am on, Soliris, because not everyone with PNH has to use the drug, although I am not sure how they are able to function without it.” A recording of the program can be seen at http://www.accesshealth.tv/pnh-awareness/.

At a luncheon in Detroit in November of 2015, Breezy was approached by a girl who had seen the television program and was thankful as it helped in her diagnosis of the same disease. Breezy said, “I was shocked that anyone saw this episode and would recognize me. It totally blew my mind. I am still in touch with this girl and we have dinner a couple times a year. She actually came to my golf outing and sold bracelets last year for PNH awareness, and this year volunteered her time to help me raise money.”

In April of 2016, Breezy was invited to speak at a meeting New York. This time a more formal event with physicians presenting and a much bigger audience.

Also in 2016, Breezy started an annual golf outing to raise PNH awareness, as well as funds for PNH programs. “I thought it was my turn to give back to the PNH community”, Sandborn said. “I did the bulk of the work by going to businesses looking for donations, both monetary or door prizes, and looking for hole sponsors and people to play. I was completely shocked at how many golfers I had sign up for the first outing that I was overwhelmed with the support.”

The 2016 outing attracted 144 golfers and raised approximately $8,400. The 2017 outing attracted 136 and raised $8,200. Both outings were held at Portland Country Cub. Breezy said, “I think my volunteers also are a part of how I was able to raise so much money. They were the ones selling 50/50 and raffle tickets, and were a great team to help me when I was busy dealing with the golf aspect of things.”

The proceeds from both outings have gone to the Aplastic Anemia and Myelodysplastic Syndromes International Foundation, or AAMDS. It is an organization focused on bone marrow failure disorders. More information on that organization can be found at http://www.aamds.org.

While taking a broader look at her journey, Breezy says, “One thing I have realized is that everyone who is living their life with PNH is totally different from the person sitting next to them who is living their life with PNH, and it can change without you knowing or feeling something is wrong. I think one thing that is super important to remember is that PNH does not run my life… I run my own life, and PNH is along for my journey. Staying positive is a major thing in life!”

If you would like to learn more about PNH, please visit:

http://pnhsource.com/

http://www.soliris.net/PNH/patient/signs-and-symptoms

https://rarediseases.org/rare-diseases/paroxysmal-nocturnal-hemoglobinuria/