Meet Carmen Who Uses patientMpower to Help Monitor Her Hermansky-Pudlak Syndrome
“The fibrosis of Hermansky Pudlak, like any other pulmonary fibrosis, has no cure. All we can do for now is manage it. patentMpower helps me to do that.” – Carmen
In honor of Hermansky-Pudlak Syndrome (HPS) Week we wanted to share the story of Carmen Camacho. Please read on below to learn more about HPS and how patientMpower is there to assist!
Hello, my name is Carmen Camacho. I am 53 years old and I’m a legally blind, mother of two. I have a Masters in psychobiology and work as a social worker doing clinical work with individuals with chronic mental health and physical illness here in Massachusetts. I have pulmonary fibrosis from Hermansky Pudlak syndrome, Type 1. HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem. Some genetic mutations of HPS (1,2 and 4) will develop pulmonary fibrosis 100% of the time.
On top of my HPS I was diagnosed with rheumatoid arthritis (RA) last March and funny to say, I cried more over the RA diagnosis than my HPS. The pain and inflammation is a constant reminder that RA can also affect my lungs. I was diagnosed with HPS in 1989 but it wasn’t until 2000 that I had to deal with the pulmonary fibrosis. In a visit to the NIH, I was told that I have developed scarring in my lungs. Last year my numbers really started to change and of course, we are concerned about the fibrosis progression. Now I get seen twice a year, once by my doctor in Boston, and once at the NIH.
My friend and fellow HPS’ser introduced me to patientMpower and it has been a game changer. I am able to keep track of my FVC/dosimeter data as well as my weight and even exercise and breathlessness, all in one place. I am able to show my doctor all my numbers when I see him and we are able to keep track of the progression and plan accordingly. It has helped me to take control over my own health and even accountability for my care!! Tracking my weigh, activity and breathlessness in the same place helps me see how one affects the other and helps me change my care plan.
The fibrosis of Hermansky Pudlak, like any other pulmonary fibrosis, has no cure. All we can do for now is manage it. patiemtMpower helps me to do that. I also see how it can get me in a good health habit of tracking my numbers, that will be absolutely important if I ever get the miracle of a lung transplant. I see from my friends that had the gift of life through transplant, how important it is to monitor your numbers to avoid complications and to see any changes before they are unmanageable. I think that you have to be your best medical home and care for your health.
patientMpower has helped me to accomplish that!
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by Jennifer Bulandr