App allows users to ‘see’ retinal disease

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A new virtual and augmented reality app called “In My Eyes” allows users to experience what it is like to have different kinds of retinal disease. Regeneron Pharmaceuticals teamed with Intouch Solutions to create the app.

Available for free download in the iTunes and Google app stores, the app can be used with or without virtual reality goggles and has two modes. The story mode allows viewers to choose one of three patients sitting in a doctor’s office and find out their story. The patients have one of three diseases: neovascular age-related macular degeneration, diabetic macular edema or macular edema following retinal vein occlusion. The live mode utilizes the viewer’s phone camera and enables the viewer to see whatever is in their line of vision through three different retinal conditions.

The app’s creators hope that the app will help doctors as well as caregivers of patients to better understand what the patients are experiencing and thus help all involved with the patient to better empathize and help the patient deal with the condition.*

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FAQ’s: PAH Experts, Pregnancy, Mild PAH, Vacationing & PAH

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Your Questions Answered
CCCs for PAHWe continue to have many readers asking us questions as to where to find PAH experts.  We have written extensively on this issue.  I will summarize below.

1.      Comprehensive Care Centers and Regional Care Centers

2.     Doctors participating in clinical trials for PAH tend to be more expert and have more interest in the disease.  Visit and look for actively enrolling studies with doctors in your area.

3.     Practice makes perfect:  the larger the program the more expertise.  A doctor with 3 patients will not have the same level of expertise as a doctor with 300.  Ask your doctor how many patients with PAH they actively manage.

We recently received some questions about pregnancy and PAH
PAH leads to high pressures within the blood vessels of the lungs.  Over time, the right ventricle which has to pump blood through the lung blood vessels may fatigue.  During pregnancy the increase in blood volume that accompanies normal pregnancy results in markedly increased work for the tiring right ventricle.  This can lead to right heart failure.  Women who are pregnant and newly diagnosed with PAH should immediately be seen by a center with expertise in PAH and more importantly with expertise in managing PAH during pregnancy. This is a very high risk situation.

If you are in a country without much expertise in the management of PAH or limited treatment options the situation is even more complicated and riskier.  The ERA class of medications (Letairis/Ambrisentan, Opsumit/Macitentan, and Tracleer/Bosentan) are strictly prohibited during pregnancy.  The PDE 5 inhibitors (Adcirca/Tadalafil Revatio/Sildenafil) have been used safely in pregnancy.  Flolan/Epoprostenol and Remodulin/Treprostinil have also been used safely in pregnancy.

In woman already diagnosed with PAH it is very important to avoid pregnancy through the use of effective contraception.
Does mild PAH need to be treated?
If after thorough testing the correct diagnosis is mild PAH, my practice is to treat.  I do not think that watching and waiting for PAH to progress is a good strategy.  The optimal treatment regimen has yet to be determined in patients with mild disease.  Our best data to address this comes from the AMBITION study.  However, these newly diagnosed patients that participated in this study did not have mild disease, they had moderately advanced disease.  With all that being said, I would still treat.
Vacationing with PAH
traveling with pulmonary hypertensionPAH does not mean that you are prohibited from going on a vacation.  I have patients that are on every combination of pills/pumps and they vacation successfully.  I would take the following precautions:

1.      Avoid high elevation destinations (stay less than 5,000 feet and perhaps less than 3,000 feet if you have more advanced disease).

2.     Choose a destination with good healthcare.  For example if you want to visit Hawaii, the island of Oahu has more sophisticated health care than the other Islands.

3.     Avoid very remote destinations.

4.     Always buy travel insurance that covers the cost of a medical evacuation to your home town.

5.     Know where the PAH experts are located when traveling.

6.     Ask your PAH doctor for advice.

Wealth Shouldn’t be a Requirement for Health

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Without insulin, many people with diabetes (PWDs) would die. It’s not a luxury item; it’s a necessity. Endocrinologist Dr. Silvio Inzucchi estimates “in someone with 0% insulin production, they’ll begin to fall ill within 12-24 hours after last insulin injection, Read on! →

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Use of mental health services may reduce adolescent depression

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Jess Bone publishes her debut blog on a recent longitudinal cohort study, which looks at the reduction in adolescent depression after contact with mental health services.

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