Lodi Sisters Battle Rare Disease Together

LODI -- Two sisters from Lodi are raising awareness about a rare disease.

TJ Spencer may be looking at a limited lifespan but the 21-year-old Lodi native says her mother and 18-year-old sister, Lauren, help her navigate past the worry and confusion over pulmonary hypertension.

"Helped me a lot to have someone who knows me so well and knows how to talk to me about it and knows what I need to know," Spencer said.

The two sisters are both battling the same rare disease that has left them weak, tired and fatigued.

"My friends die every day and I kind of understand what it means when old people say that all their friends are dying," Lauren Spencer told FOX40 over FaceTime.

The sisters say their battle is bigger than them. They’re not only fighting to save their lives but they’re also hoping to save many others who have pulmonary hypertension.

Dr. Jeff Fineman with University of California, San Francisco Benioff Children’s Hospital says pulmonary hypertension is often misdiagnosed.

"Unfortunately, our treatments are exactly the same," Fineman said. "So we need to get to the point where we can understand individuals' disease process."

Dr. Fineman says about 80 percent of patients with pulmonary hypertension who are on medication have a lifespan of at most five years. There is no cure and patients have to get lung transplants.

Fineman says besides lack of funding and research, all patients need to receive individualized care.

"And come up with drugs that can optimize the individual's particular problem," Fineman said.

The Spencer sisters say medicine is very costly. Because TJ Spencer is considered an adult her insurance will only cover some of her medications, which cost $15,000 a month.

Lauren's is four times that much.

"Yeah, I wouldn’t be alive without state insurance," TJ Spencer said.

For the siblings, whose father fought the same disease and died when he was 36 and whose grandfather was also recently diagnosed with the same disease, they find comfort in their shared struggle to find a cure.

"There’s no one else I’d rather go through this with," TJ Spencer told FOX40. "She’s really my best friend."

Fineman adds his goal is to see that every child with the condition gets put into a clinical study to find help find a cure.

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