My 3 Tips for Starting a New Treatment

Erin Fontin shares her PNH treatment tips.

Watch More Videos From Erin

​

Transcript

00:00:00:00 - 00:00:28:09
Erin Fontin
When I started my first treatment, I felt a bunch of different physical feelings as far as trying to learn my body’s limits, trying to see what is my new normal. I think it’s really important for PNH patients to be open to switching treatments. My treatment plan has evolved over time. I think starting with a treatment that worked really well for me was fantastic, but that treatment option ended up not being for me.

00:00:28:09 - 00:00:47:11
Erin Fontin
I didn’t feel super great on it. At that point, I did approach my doctor and say, “What are my options that I have?” So it is a continuous, ongoing conversation with my doctor as far as treatment plans. My tips and tricks for starting a new treatment: The first one would be definitely plan to take it easy. Don’t make plans.

00:00:47:12 - 00:01:13:08
Erin Fontin
Stay on the couch. Rest, so that way you can learn how your body is going to react to the new treatment. When I first started my treatment, I experienced more side effects at that time. As time went on, my body accepted the medication more and it didn’t necessarily block out a whole day for me. My second trick that I have is to try to create little bits of happiness to lighten the load of the day.

00:01:13:08 - 00:01:35:23
Erin Fontin
An example would be if you take certain vitamins, gummies, if there are certain flavors that you like, save those flavors for your treatment, so that way you have that little bit of happiness. My last trick that I have for starting a new treatment is to find something that you enjoy. So whether it’s reading a book, seeing a friend, or a plan to call a friend — something that you can look forward to.

00:01:35:24 - 00:01:43:19
Erin Fontin
When I started doing that, it would give me that little bit of happiness and hope. Learn more and connect at myPNHteam.com.

​

“I think it’s really important for PNH patients to be open to switching treatments,” Erin Fortin said. Diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2019, Erin has spent the past several years learning to navigate life with a rare condition — and connecting with others doing the same.

Treatment options have expanded since Erin was first diagnosed, and that gives her hope. “I think it’s really special to see all of these new options becoming available as years go on,” she said.

Through treatment and advocacy, Erin has built a personal tool kit of strategies to ease into new therapies. These tools can help others who are beginning a new treatment journey. She shared three of her go-to tips.

1. Clear Your Calendar

Erin encouraged others to give themselves space and grace — especially early on — when starting something new.

“Definitely plan to take it easy,” she said. “Don’t put it on yourself to do anything. Don’t make plans. Just take it easy, stay on the couch, rest — so that way you can learn how your body is going to react to the new treatment.”

When Erin first began treatment, side effects took more of a toll than they do now. “As time went on, I feel like my body accepted the medication more, and the symptoms were less and less,” she said. But in the beginning, Erin found that rest helped her better understand how her body was adjusting.

2. Add Little Bits of Joy

Whether it’s a cozy blanket, a favorite podcast, or the pink Starburst candy saved for later, Erin recommended incorporating small rewards or comforts as you get started with a new treatment.

“My trick is to try to create little bits of happiness to lighten the load,” she said. “If you take certain vitamins or gummies, if there are certain flavors that you like, save those flavors.” She explained that small treats like this give her “that little bit of happiness” to look forward to.

This small but meaningful ritual has helped Erin feel more positive about starting a new treatment regimen.

3. Take Time for Yourself

For Erin, occupying her mind at the beginning of a new treatment helped reframe the experience. “Find ways to keep yourself occupied, something that you enjoy,” she said. “Whether it’s reading a book, if you have a season finale of a show, or a plan to call a friend.”

Erin explained that this shift in mindset turned treatment into something to look forward to. “When I started doing that, I really flipped it to view my treatment time as my ‘me’ time.”

Staying Open to Newer Options

As Erin’s treatment needs changed, she stayed engaged in regular conversations with her healthcare team. “My treatment plan has evolved over time,” she said. “I did find that my veins were getting weaker and weaker. ... So at that point I did approach my doctor and said, ‘What are my options that I have?’” She emphasized that, “It’s a continuous, ongoing conversation with my doctor as far as treatment plans.”

Join the Conversation

On myPNHteam, people share their experiences with paroxysmal nocturnal hemoglobinuria, get advice, and find support from others who understand.

Have you discussed new treatments with your PNH specialist? Let others know in the comments below.

Return home