Interview

Source:  Interview    Tag:  progeria patients
Earlier today, I found a doctor who was willing to answer my questions via email. I have been having trouble contacting doctors, because there are not many doctors who know much about Progeria. This is because, there are so little cases of Progeria, it's hard to become an expert in something little known about. I asked a doctor who specializes in Neurology at Children's Hospital in Columbus, Ohio. His name is Dr. Geoffrey L Heyer. These are the questions that I asked, and he answered:

1. Are people with Progeria limited in their ability to do anything? 

Progeria is a very rare disease that effects several different organs. Patients have difficulty gaining weight, and they do not have normal growth. Blood vessels can become damaged causing young Progeria patients to develop heart disease (heart attacks) and brain disease (strokes) as if they were much older. Their difficulties with weight gain and their predisposition to cardiovascular disease limits their ability to do many normal daily activities.

2. How do parents cope and decide when to tell their child they have Progeria?

Unfortunately, by the time children with Progeria are old enough to understand their disease, they will have seen many doctors. Most patients have normal intelligence. They do not look the same as other children their age, so they learn at an early age that they are different. They will learn this regardless of whether their parents decide to tell them or not. As there is no current cure for Progeria, parental coping is very difficult.

3. What's the best treatment for someone with Progeria? 

There are so few Progeria patients in the world that it is difficult to develop treatment guidelines. We often give them the medicines that we would give to much older adults to help prevent heart attacks and strokes. There is a clinical study conducted in Boston of a special medicine that may help to slow the progression of disease and improve growth and nutrition. The doctors in Boston fly children in from all over the world to participate in this study. Hopefully, it will prove to be helpful.

4. I recently researched that people with Progeria don't live long enough to produce sex hormones so they can't produce offspring. Will there ever be a chance in the future for people with Progeria to live long enough to produce offspring, yet alone, live to be consider a "senior"?

Hopefully, a medicine is found that improves lifespan in these patients.

5. Do you think we will ever find a cure? (Rid of this disease like a vaccine for the flu before they're even diagnosed)?

Genetic syndromes are different from infections. It is possible that an effective treatment will be found, but we do not have the technology to rid an individual of a genetic disease. The only known means of prevention are secondary, meaning that after a child is born with Progeria we can counsel the parents about the risks of their future children being born with the Progeria. 

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