In the US? Ask your Member of Congress to join the Rare Disease Congressional Caucus

Help us strengthen the rare disease community’s voice on Capitol Hill!  Please take 3 minutes to ask your Member of Congress to join the Rare Disease Caucus at http://bit.ly/RareAlert.

 

It’s easy – the Action Center has a draft letter that will automatically be sent to your Member of Congress – just put in your name and address & click send.  We also encourage you to personalize the letter to share information about your specific disease.  If your Congress Member is already on the Caucus, the letter will automatically populate as a thank you letter instead – these are just as important to send!

 

It can take up to 10 letters from constituents for a Member to respond so please share this Action Alert with your friends, family & colleagues.  Join our Facebook event & invite your friends:   http://on.fb.me/17Mlpjg

 

The Rare Disease Congressional Caucus will help bring public and Congressional awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry, and create opportunities to address roadblocks in access to and development of crucial treatments.  The Caucus will give a permanent voice to the rare disease community on Capitol Hill.  Working together, we can find solutions that turn hope into treatments.

Know Your Number

English: "Dr. Harvey Cushing," oil o...

English: “Dr. Harvey Cushing,” oil on canvas, by the American artist Edmund Tarbell. Courtesy of the Dittrick Medical History Center. (Photo credit: Wikipedia)

From my email:

As an advocate for patients with Cushing’s disease and their supporters, you certainly understand the importance of continually monitoring cortisol.

April 8th marks Cushing’s Awareness Day and the birthday of Dr. Harvey Cushing, who first described the disease in 1912. We want to use the month of April to bring attention to this disease. In honor of this day, Novartis Pharmaceuticals Corporation is kicking off “Know Your Number,” an important new program emphasizing the importance of cortisol regulation.

Being an advocate for those with Cushing’s disease and for those who care for them, you know that even after a successful pituitary surgery, where cortisol levels return to normal, there is still up to a 35% risk the pituitary tumor could begin to grow again, thus causing hypercortisolism. This potential rise in cortisol is also true for patients who are currently taking medication to control their Cushing’s disease. Over time, this control may begin to diminish. These important facts make it essential that your members are aware of the need to monitor their cortisol level.

Novartis Pharmaceuticals Corporation is initiating an important new program, and we would like to partner with Cushing’s Help and Support to bring this information to your membership and to all patients with Cushing’s disease. “Know Your Number” reminds both endocrinologists and patients that hypercortisolism can have devastating consequences on a patient’s body and emotions. “Know Your Number” promotes follow-up cortisol testing to help identify those patients whose cortisol levels have increased.

Please reach out to your membership with this message during the month of April as we celebrate Dr. Harvey Cushing’s birthday.

To learn more about this program and Cushing’s disease, and to download a discussion guide, please visit www.CushingsDisease.com

Know Your Number.

Early Detection, Treatment Needed To Reduce Risk Of Death, Cardiovascular Disease In Cushing’s Disease Patients

Even after successful treatment, patients with Cushing’s disease who were older when diagnosed or had prolonged exposure to excess cortisol face a greater risk of dying or developing cardiovascular disease, according to a recent study accepted for publication in The Endocrine Society’s Journal of Clinical Endocrinology & Metabolism (JCEM).

Cushing’s disease is a rare condition where the body is exposed to excess cortisol – a stress hormone produced in the adrenal gland – for long periods of time.

Researchers have long known that patients who have Cushing’s disease are at greater risk of developing and dying from cardiovascular disease than the average person. This study examined whether the risk could be eliminated or reduced when the disease is controlled. Researchers found that these risk factors remained long after patients were exposed to excess cortisol.

“The longer patients with Cushing’s disease are exposed to excess cortisol and the older they are when diagnosed, the more likely they are to experience these challenges,” said Eliza B. Geer, MD, of Mount Sinai Medical Center and lead author of the study. “The findings demonstrate just how critical it is for Cushing’s disease to be diagnosed and treated quickly. Patients also need long-term follow-up care to help them achieve good outcomes.”

The study found cured Cushing’s disease patients who had depression when they started to experience symptoms of the disease had an elevated risk of mortality and cardiovascular disease. Men were more at risk than women, a trend that may be explained by a lack of follow-up care, according to the study. In addition, patients who had both Cushing’s syndrome and diabetes were more likely to develop cardiovascular disease.

The study examined one of the largest cohorts of Cushing’s disease patients operated on by a single surgeon. The researchers retrospectively reviewed charts for 346 Cushing’s disease patients who were treated between 1980 and 2011. Researchers estimated the duration of exposure to excess cortisol by calculating how long symptoms lasted before the patient went into remission. The patients who were studied had an average exposure period of 40 months.

The findings may have implications for people who take steroid medications, Geer said. People treated with high doses of steroid medications such as prednisone, hydrocortisone or dexamethasone are exposed to high levels of cortisol and may experience similar conditions as Cushing’s disease patients.

“While steroid medications are useful for treating patients with a variety of conditions, the data suggests health care providers need to be aware that older patients or those who take steroid medications for long periods could be facing higher risk,” Geer said. “These patients should be monitored carefully while more study is done in this area.”

From http://www.medicalnewstoday.com/releases/256284.php

Have You Been Helped by Health IT?

Do you have a story of how health IT, especially access to data, helped in a case?  Improved an outcome, speeded a diagnosis, caught an error, anything?

The National eHealth Coalition is looking for real-world anecdotes, for use (anonymized or not) in their new “NeHC University”:

On June 20th we are hosting NHIN 304 – HIE Success Stories from the Patient Perspective. Our goal for that class is to get some stories from/focusing on patients whose health was improved or whose care was made more effective as a result of health information technology and exchange. …

We are not necessarily looking for patients to speak on the webinar (although that would be great), but we do want to share some patient-centric examples that will emphasize the value proposition of health information exchange from the patient/consumer perspective.

To contribute, write directly to NeHC’s Jenna Bramble at jbramble@nationalehealth.org

Medical Apps, Part 4: RXmindme

I often forget to take my meds.  And other days, I can’t remember if I took them or not.

So, here’s another great (FREE!) iPhone App:  Rxmindme

From their features list at http://www.rxmind.me/Features.aspx

Making your life easy

RxmindMe includes:

  • Nine different types of reminders
  • A Passcode Lock screen for your privacy
  • Multiple types of alert sounds
  • Photos of your prescriptions
  • Email your prescription history
  • The FDA Drug Database for easy searching of medications
  • Historical records of all your reminders and prescriptions
  • Multitasking
  • Fast App Switching
  • iPhone 4 / iPod touch 4 – Retina Graphics
  • Snoozing Capabilities, 15 minutes, 30 minutes, 1 hour, or 2 hours
  • Ability to add multipule prescriptions / pills / vitamins / medications to a single reminder

RxmindMe has a growing feature set. We keep adding new things to help fellow pill takers monitor their medications, track what they take, and view their history of their medications.

We believe compliance is important for anyone taking medications, that is what RxmindMe aims to do, help you stay healthy and safe. No matter what you call your medications – pills, prescriptions, medications, or vitamins, we have the App to track them all.

RxmindMe allows you to use any application and receive reminders. We utilize iOS 4’s Local Notifications instead of the old Push Notifications. With Local Notifications, you need no network connection. Meaning you’ll receive your reminders anywhere at any time.

The home screen of RxmindMe gives you all your reminders for the day in once place. It allows you to easily identify which reminders you have missed, which reminders are coming up, and which reminders you have already taken.

From this home screen, you will have the option to create snoozes, add as needed reminders, and add prescriptions you take randomly throughout the day – like Asprin.

RxmindMe allows you to create nine different types of reminders

  • Daily reminders, ones that can occur on any day of the week
  • Weekly reminders, like daily reminders, but you can set weekly repeat intervals
  • Monthly reminders, monthly reminders that occur on a specific date during the month
  • Monthly reminders, monthly reminders that occur on a specific day of the week of a specific week of the month – for example, the last Friday of the month
  • Our new Every “X” Days reminder, repeats every few days
  • Hourly reminders for specific hourly intervals
  • As needed reminders which are taken infrequently
  • On specific dates, reminders that you want to occur on specific dates – for example the 28th of November

Now with the ability for devices with cameras to take photos of your prescriptions, you can see visually what you are supposed to take.

RxmindMe will keep and store your photos for your medicates, then it will display them along your reminders.RxmindMe now includes the up to date FDA database. You can search for prescriptions in RxmindMe, select the one you want, and it will auto populate the details for you. No more entering the units and name yourself!

No more forgotten meds for me!

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