Donor & Patient Stories

“I would like to think of myself as a ‘lifesaver’ and hopefully my plasma has prolonged the lives of others so their families didn’t have to go through an unfortunate time.”

I started donating 14 years ago because I needed the money when I was moving my family back to Iowa and Christmas was coming. I donated at a competitor for 3 years before coming to Octapharma in June of 2010.  

Since then times have changed, the kids have graduated college and have moved out on their own. I can honestly say that I don’t donate for the money anymore. Originally, I was in a race with a friend to reach 1000 donations. Unfortunately, he was diagnosed with COPD and is unable to donate any more. However, when I was at donation 700, it really became a goal of mine to hit 1,000 donations at Octapharma in Des Moines.

I can honestly say there are two main reasons that I donate weekly, twice a week. The first reason is definitely knowing that I am doing good for so many other people around the world. I would like to think of myself as a ‘lifesaver’ and hopefully, my plasma has prolonged the lives of others so their families didn’t have to go through an unfortunate time. The second reason is all of the employees there, as well as the other donors that I have gotten to know during these 11 years. 

I have seen a lot of people come and go and have even spent more hours there than some of the newer staff, but seeing them weekly makes it feel as though they are a part of my extended family. They are great people.

One more thing I would like to add is that my wife is a liver transplant recipient. She had a liver transplant on June 2, 1997. We didn’t meet until June of 2004, but I know she’s been the recipient of plasma also, so that keeps me going – just knowing I am making a difference in people’s lives.

I will continue to donate, twice a week for as long as I can. I am currently at over 1,008 donations and I am looking forward to bringing another cake to the center in September 2022 for my 1,100 donation.”

“I’m a firm believer in helping others and giving back however I can.”

“When I donate plasma, I make it possible for healthy children to be born.”

Mother, Nelly, helps daughter, Sebaga, live her life with von Willebrand Disease to the fullest with the help of wilate, a plasma-based medication by Octapharma.

When Sebaga was born and the nurse gave her an immunization injection, the prick from the needle didn’t stop bleeding for more than a day. Over the first months of Sebaga’s life, her mother, Nelly, noticed other instances of prolonged bleeding that resulted from even small scrapes.

“Sebaga only got worse, and she fell into a coma twice,” her mother recalls. She was given a blood transfusion five times and yet nobody knew the cause of her problems. Desperately wanting an answer, Nelly ran from pediatrician to oncologist. “After so many results, we were finally sent to a hematologist, who told us about the possibility of von Willebrand disease,” Nelly says.

At the end of 2017, Sebaga started treatment with wilate®. Now, she is on weekly prophylaxis and has regular follow-ups with a pediatric hematologist every three months. Like many kids her age, Sebaga is very inquisitive and always on the go.

“Despite everything,” Nelly says firmly, “Sebaga inspires me to do more in life. We’ve been through a lot together – we have hope and love!”

Seth believes that life presents all of us with challenges, but if we continue to work hard and think positively, good things will happen. With the help of nuwiq^® by Octapharma, Seth overcomes his struggles with Hemophilia A and inspires others with his athleticism and spirit.

At age 28, Seth Rojhani is living proof that anything is possible. When he was just 6 months old, Seth was diagnosed with both severe Hemophilia A and cancer. A complication during tumor removal surgery caused T-2 level paraplegia, leaving Seth in a manual wheelchair ever since. “My situation was unique. Hemophilia was definitely a major issue, but there were other issues at the forefront for us as a family.”

As a Patient Educator for Octapharma, Seth shares the tools and resources that have allowed him to successfully maintain an active lifestyle while managing his bleeding disorder. “I love sports. Growing up, I was extremely active and I always wanted to do anything athletic. But from an early age, I was told ‘no’ because of my hemophilia. My mom and I had to really educate people on hemophilia and how it’s not something that will hinder you from doing a lot of things – as long as your treat your condition properly.”

Today, Seth lives in Denver, Colorado, plays for the Denver Rolling Nuggets as a part of the National Wheelchair Basketball Association, and is a Paralympics bronze medalist with Team USA. He also coaches the Denver Jr Rollin’ Nuggets team.

Seth switched to nuwiq^® 3.5 years ago. He was previously on rFVIII, Xyntha^® for 8 years, using a prophylactic regimen 3 times a week. “I was having some bleeds, and I wanted to reduce them. When nuwiq^® came on the market, I hoped it would be a better choice for me – so I made the switch. The fact that it’s produced using human cells rather than hamster cells was also a factor.”

“For me, nuwiq^® really helped me put an end to the breakthrough bleeds that would sometimes limit me. Now, when I play basketball, I make sure to infuse before every game.”

Seth is on a personalized prophylaxis regimen. He describes the process of pharmacokinetic testing as relatively easy. “For me, it took just one day of testing. It’s been almost 4 years since starting on a personalized prophylaxis regimen, and it’s working for me very well. I have a good relationship with my physician and hemophilia treatment center. They know how active I am and understand the best way to treat me.”

“When talking to patients about nuwiq^® I ask first if their current treatment is working for them and are they happy with it? Are they happy with the results they’re getting? From there, I will go into my experience with nuwiq^® and how it’s worked for me.”

Mother of seven, Robin, has a fierce advocate for herself and her children through their ongoing treatment for von Willebrand Disease. She and her family rely heavily on wilate®, a plasma-based medication by Octapharma, to lead comfortable lives.

Robin is the mother of seven kids, all diagnosed with von Willebrand disease (VWD). She herself has only been diagnosed with the disorder on the basis of her symptoms, as blood panels and genetic testing have never shown the disease. 

After multiple difficult pregnancies and watching all of her children be diagnosed and treated, Robin persistently advocated for the use of wilate® in her treatment. This determined mom has researched and strongly advocated for her treatment of choice, believing that the quality of life that factor therapy delivers is best for herself and her kids. For Robin, protecting her family is a “no-brainer”.

“When life gives you such an opportunity to make a difference, don’t miss it. Just do it.”

Debbie was born in South Africa. At 6 months of age, a mosquito bite on her face would not stop bleed. At the recommendation of her uncle, a pediatrician, Debbie was tested for a bleeding disorder and was subsequently diagnosed with severe type 3 VWD (von Willebrand Disease).

Growing up with VWD in the 60’s and 70’s meant dealing with constant nose bleeds, heavy menstrual cycles, and joint bleed with limited treatment options that left Debbie and her family concerned for her safety.

After moving to the United States and starting a family, Debbie sought a sustainable way to treat her VWD and discovered wilate, an Octapharma medication, 9 years ago. 

As a long-time wilate patient, Debbie wants patients to know that Octapharma makes it affordable to treat their bleeding disorder. Debbie has been a powerful advocate for the VWD community and often speaks about her experiences as someone living well with severe type 3 VWD. She believes that people with VWD have an opportunity and a responsibility to educate and inspire others. She encourages anyone looking to donate plasma that “when life gives you such an opportunity to make a difference, don’t miss it. Just do it.”

Austin’s Hemophilia caused him to miss out on part of his childhood but, thanks to plasma-based medicine, he is free to live a normal life with his peers.

“The brilliant thing about me having the opportunity to work with Octapharma as a Clinical Nurse Educator is that I have the ability to touch the lives of so many folks with PI (Primary Immunodeficiency).”

“What I would say to someone with Hemophilia is don’t let hemophilia hold you back. You can manage the disease with your medication. You don’t have to worry so much about it.”

Julia’s von Willebrand Disease made the delivery of her first child difficult and painful. However, after switching to wilate^®, a plasma-based medication from Octapharma, Julia was able to deliver her second child with ease of body and mind!

The eldest of five kids, all with various bleeding disorders, Julia was tested for von Willebrand Disease (VWD) at age six. Although she suffered pain, bleeds, and bruising throughout her childhood and adolescence, because her factor levels were considered “borderline,” she often felt that her symptoms were not taken seriously or adequately addressed.

Like many women with VWD, Julia experienced severe menstrual bleeding, miscarriages, and a traumatic experience with the birth of her first son. These experiences had a profound impact on her. During her second pregnancy, Julia switched to wilate^® in combination with Amicar and her life changed for the better. She has found that she can manage her bleeding, bruising, and pain far more effectively. Perhaps most strikingly, with factor therapy, the delivery of her second son was completely different from her first experience — it felt normal. 

Today, she wants to help revolutionize the way high-risk pregnancies, especially for women with bleeding disorders, are handled. She has become a “factor fan” and advocate, and wants to spread the word to others like herself.