What is Patients Like Me? 0
What is Patients Like Me all about?
Go to Patients Like Me to discover a new online forum where over 600,000 patients with 2,800+ different health conditions share their medical history, symptoms, medications, and side effects. All in the hope that others will compare and learn about their particular condition or treatment, so they make better choices. As patients, we do not have access to see the true independent clinical research about medications and treatments. Now you can dig deeper into that important information. How many people took a certain brand-name or generic medication and found it useless? Were the side effects of a new drug too risky to deal with? What other options do you have? You just may find the answers there.
Is that information going back to the drug manufacturers and pharmaceutical companies to know that some medications are good, bad or ugly?
YES! It did not start out that way. It really was just a forum for patients. But it grew so exponentially big, that it's become even more powerful than just a consumer/patient forum.
NOW the big pharmaceutical companies are actually taking back the statistical information from the website and using it to re-strategize their own medical research and drug development! This is a HUGE breakthrough for patients!
Is the Food and Drug Administration paying attention to this online site as well?
YES! Since 2016, the FDA is benefitting from direct patient-reported data and gaining powerful insights to drug efficacy and safety! This is so exciting for everyone. It's a win-win partnership for all.
As of 2015, over 110,000 adverse drug reactions were reported on that site alone. Because the FDA has always struggled with a huge gap in adverse drug reporting from doctors and patients, now this online forum is a safe place for patients to share their reactions. The FDA has now taken this site seriously as a place to survey starting points on market reactions.
Has there been any case where PatientsLikeMe.com helped get a drug recalled or refuted?
YES! Because of the data generated about a lithium carbonate treatment for amyotrophic lateral sclerosis (ALS) the same disease that Professor Stephen Hawking died from in March 2018, they were able to refute results from an actual clinical trial!
Again...we are here happy dancing at this news that a patient-to-patient network was about to evaluate and provide more realistic results than a clinical trial! We think PatientsLikeMe.com should qualify for a courtesy Nobel Peace Prize in Medicine for helping redistribute the power back to patients and their voices, rather than relying only on the frequently skewed clinical trials that have vested interests in more profitable results to benefit drug manufacturers.
We hope that this platform stays true to their original intent and does not sell out to the proverbial devil and the deep pockets that feeds the system. As of the writing of this book, we have not found any hint of that occurring. However, whenever data is shared, a higher level of vigilance is needed to make sure that power is not hijacked.
Why didn't anyone think of this long ago?
Sometimes it takes a devastating heartbreak to drive a question into a movement into a revolution. In this case, it was two brothers, James and Benjamin Heywood, who were inspired to reach out and find more effective treatment for the ALS disease that their brother was diagnosed with at 29 years old. The two brothers just needed a resource to compare notes with other ALS patients, so they could decide what treatment option would be better. There were no other resources. That's how PatientsLikeMe.com was born.
In just one decade since their brother's death, PatientsLikeMe.com has grown to be a force to reckon with as a robust and legitimate resource information platform. We congratulate they Heywood family and the team at Patients Like Me for their noble mission and their accomplishments already made to the medical community of patients.
How can PatientsLikeMe.com benefit the eczema/psoriasis and other skin condition patients?
If more skin condition patients register online and deposit their health journeys and detailed topical steroid medication experiences, then the statistical database of pros and cons will grow. Once more data is accumulated, the public awareness will benefit, as well as medical practitioners to know if their protocols are working.
Has anyone reported Topical Steroid Side Effects or Red Skin Syndrome on PatientsLikeMe.com?
YES, YES, YES! As of this book publication date, there have been 68 patients that reported their own experiences with each topical steroid they used. In fact, the condition is listed as Red Skin Syndrome/Topical Steroid Withdrawal. There you have it folks! Where many medical practitioners have not acknowledged this condition, there is now an independent platform that does right there, and it is open for everyone to review. This is just a starting point to provide a safe place to deposit the long history of topical steroids and efficacy and potential side effects.
Is there any way to create a poll or another type of survey within Patients Like Me?
YES! YES! YES! They have a large research division within their platform and can set up an independent survey by contacting the folks at Patients Like Me RESEARCH tab on their website. They can guide and initiate how they can help to administer this type of survey. There are academic ways to do this or with an independent group to get this funded by grants as well. This is where it all comes together. Dermatology students also have credence to work with Patients Like Me and their data to help with publishing papers and research activity.
Is it really anonymous?
A patient or caretaker can create an anonymous profile on any computer and set up their health history and medications list(s). They can detail their experiences with each medication or treatment protocol. It is a brilliant concept to help share valuable information that would otherwise not be available to patients.If you've read this book thus far, you must know someone that has dealt with topical steroids on some level. Please forward this information to them and encourage them to share their experiences on Patients Like Me.
Can we really make a difference just by inputting our individual health issues on a website?
Thank you for asking this magnificent question! That one question may be the key to saving humanity...no, seriously! There is a new platform online for patients and caretakers that could be the missing piece to the puzzle. It was created by two brothers who lost their other brother to Amyotrophic Lateral Sclerosis (ALS.) When they explored the medical options available for treatment and what, if any, side effects they had, they found a huge void and lack of available information. Just like topical steroids! They needed to compare medications their brother was given and how it fared with others that were a few stages ahead. What was the statistical average of survival and what were the side effects? The brothers intuitively knew that relying on the original clinical test of the pharmaceutical companies was not wise. After all, those companies had a vested interest in swaying information in their favor and, quite possibly, were not going to help them in trying to save their brother.
So they started a website called www.PatientsLikeMe.com. They created an online system where anyone - patients or caretakers - can share their true experiences with each drug, medical protocol and side effects with honest feedback fromothers that went through the same ordeals. WHAT A BRILLIANT CONCEPT, right? Here at ELAJ headquarters, we constantly nag, nag, nag for anyone and everyone with any disease or medical ailment to register, even if anonymously from a random computer at a library or hospital to just DO IT! For the sake of humanity, DO IT! For the sake of clearing our collective conscience to help others in need, DO IT!
Imagine if 70% of patients with eczema or psoriasis input their information into that database? I can imagine the shivers of the pharmaceutical executives all the way through my computer keyboard as I'm writing this. How else can we, patients and caretakers of those that are ill, gain control back from the dominant power of Big Pharma? This could be the ONLY way to statistically get the data and leverage back in our favor.
In light of the latest concern about opioid drug addiction and abuse, imagine people sharing their stories. Cancer treatments and the recurrence ratios and hearing from people in similar cases describe their actual health journeys? This is why I think this could be one of the keys to saving humanity. It has become a beacon of light for so many people.
International Topical Steroid Awareness Network - ITSAN 0
What is ITSAN?
ITSAN is a non-profit organization dedicated to spreading awareness about Red Skin Syndrome, also known as Topical Steroid Addiction or Topical Steroid Withdrawal. Their full name is International Topical Steroid Addiction Network. Also they have been known as Topical Steroid Awareness Network.
Their website is www.ITSAN.org.
The youtube channel is linked here.
ITSAN Red Skin Syndrome Support has grown into a thriving world-wide online community where members share, comfort and encourage one another. ITSAN serves international populations as a resource for the individual, the caregiver, and the healthcare provider.
How old is ITSAN and how did it get started?
Again, we are amazed at how one individual's experience and heartache can turn a question into a snowball movement and potentially a revolution in less than a decade. In 2009 a woman started the website AddictedSkin.com from her own experience in Red Skin Syndrome and her personal topical steroid withdrawal experience into an international resource and safe zone for so many! Kelly Palace posted her photos as well as articles and white papers from Dr. Fukaya, Dr. Rapaport, and Dr. Kligman.
By 2012, Palace changed the website to ITSAN.org and filed for non-profit status with Dr. Rapaport as a co-founder. Soon after, Dr. Rapaport left ITSAN while Palace continued as president until 2015. Today ITSAN is a member in Good Standing of the Coalition of Skin Diseases since 2014. ITSAN is now hosting its own conference.
How does ITSAN work to get the word out?
ITSAN advocates for the RSS community by:
- Being a member of the Coalition of Skin Diseases
- Member of the International Alliance of Dermatology Patient Organizations (ADPO)
- Community outreach at the Eczema Expo by National Eczema Association NEA
- Participating in the American Academy of Dermatology's Inflammatory Skin Diseases/Itch Measures Work Group
- Attending the AAD Annual Meeting and Scientific Sessions
- Lobbying in Washington, D.C. With the Coalition of Skin Diseases at the Annual AAD Association Legislative Conference
- Working toward creating a patient registry to further future research efforts
- ITSAN has developed a survey to estimate Cortico-Steroid Exposure (CoStEx) that can help quantify Withdrawal & Recovery experience. The survey was developed by an MD and a PharmD. It is confidential and would help those suffering with TSA/W. Here is the link to that: ITSAN SURVEY.
- They developed a brochure that can easily be printed that can be shared with your medical team or friends and family ITSAN BROCHURE
- They produced a really cute cartoon whiteboard video that easily explains the whole deal with this crazy phenomenon ITSAN CARTOON VIDEO
What's on the immediate agenda for ITSAN to do more?
To break it down in steps, they are :
1. Developing a member registry so that the growing Facebook support group will be transferred into a database of actual members.
2. Organizing a webinar series to help offer more support
3. Host one-day conferences.
What's holding ITSAN back from really getting the word out there?
Remember this is a volunteer organization of actual RSS sufferers that are barely getting their health and lives back from the tight grip of topical steroid withdrawal recovery. The passion of getting the word out there is immeasurable from these warriors that sacrifice their own time and effort at their own expense. They are only limited by lack of funds. Many times the volunteers are relying on the $5, $10 and $50 donations from the ones that are already suffering with limited incomes due to the debilitating condition and not being able to work.
What can I do to support ITSAN.org?
There is still so much to do to get the word out. It's a two-part process. One important aspect is to work on a medical outreach program directly educating medical practitioners on topical steroid side effects.The second is public outreach directly to the eczema/psoriasis populations to help them be fully informed before, during and after the decision to use topical steroids.
Remember it was less than 10 years ago that one woman's voice started this snowball movement, and today ITSAN is a lifeline for so many to make better-informed decisions about their health through support. Imagine if your donation just happened to be the spark that helped someone avoid unnecessary suffering...
- Suhein Beck
- Tags: AAD ADPO American Academy of Dermatology Coalition of Skin Diseases eczema eczema expo Elaj International Topical Steroid Awareness Network ITSAN National Eczema Association NEA nternational Alliance of Dermatology Patient Organizations Red skin syndrome Steroid Suhein Beck topical steroid Topical Steroid Withdrawal
