Category: Uncategorized

Sascha Gallardo – November 1, 2022

When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet?

Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say?

At Ben’s Friends, one of the things we always encourage our members to do is to advocate for their own health. Since many of our members deal with rare diseases, they often encounter medical practitioners who know very little about their condition.

So instead of just being recipients of care, patients should consider themselves as part of the care team. After all, they are the ones who experience the symptoms and doctors won’t be able to diagnose or treat their illness without the patient’s inputs.

We also consider doctors as professionals that we hire to cure or treat our disease. Therefore, patients can and should choose who they want to care for them.

Below are seven things to look for when choosing a doctor:

Someone who believes your symptoms

It is a very common experience among patients of rare diseases to be told by their doctor that the symptoms are all in their head since not many doctors are familiar with the illness. The problem is when they dismiss your symptoms, there’s a tendency for them to misdiagnose and give the wrong prescription.

When looking for a doctor, it is very important that they believe your symptoms are real. Not only will you feel validated, but this is a very important element in finding out and addressing the root cause of your symptoms.

Listens to what you have to say

When you’re sick, it is normal for you to want to know all the important information. This includes details like how you could possibly have acquired the illness, activities that aggravate your symptoms, and clarifying unclear terms and instructions.

You may also want to tell your doctor everything that you think they should know in order to help you improve your condition.

Having a doctor who listens to you and answers your questions clearly and patiently not only helps you have a good relationship but it could also bring positive results in relation to your condition.

An expert or willing to learn about your illness

Ideally, the doctor you’d like to have is an expert in treating the illness you are affected with. This is not always the case, however, especially when you have a rare disease.

You might have checked a lot of rosters and asked fellow patients for recommendations but still couldn’t find one doctor who is extremely familiar with your disease.

In this case, you might want to look for a doctor who is really interested and willing to learn about your illness.

Makes you feel comfortable

When you have an illness, you just want to get things over with, with little or no friction at all. Maybe the last thing you would want to come across is a doctor who is difficult to deal with.

Although it is unfortunate, there are definitely some doctors who seem rude and show no regard to how their patients feel. Having this kind of doctor, especially if you have a chronic illness, can make things very unpleasant for you.

You might instead want to find someone who shows you respect and is mindful of the things that might make you feel uncomfortable.

Someone you trust

Having faith in your doctor can definitely have a huge impact on the way your treatment would turn out.

Whether you need a surgeon for a risky procedure or a rheumatologist to treat your pain, find someone you trust completely. If there’s anything that makes you doubt their abilities, it is better to keep on looking until you find the doctor who feels right for you.

Has a treatment plan for you

Most of the time, especially when you have a chronic illness, your doctor will have to try different forms of treatment before finding one that works for you.

It might take a while before you can determine whether a certain medication or treatment is working or not so it is possible for you to feel frustrated and wonder if you’re on the right track.

It is therefore very important to find out your doctor’s treatment plan for you. They might give you details like which medications they want to try first as well as the reasons for their choice. This also helps make you feel at ease, knowing that they actually know what they are doing.

Exhibits team work

Many patients require a team of doctors to effectively treat their illness. In such a case, it is very important that all of the members of your care team can work well together. This will help ensure that all the areas of your condition will be properly treated.

Always remember that you have a big role to play in the success of your treatment. Patients are not simply recipients of care. They should be the number one advocate for their own health. And one way to do this is by carefully selecting the doctor or team of doctors they would hire to treat them.

1 post – 1 participant

Read full topic

Sascha Gallardo – April 26, 2023

Did you know that there are diseases that can affect almost any part of the body? One of such diseases is Sarcoidosis, a rare disease that causes growth of granulomas or inflammatory cells in different parts of the body. These include the skin, kidneys, brain, eyes, and the more commonly affected organs, the lungs and the heart.

The exact cause of sarcoidosis is unknown, but experts believe it involves an abnormal autoimmune response. While this condition can affect anyone, African-American females are more frequently impacted.

Interestingly, while some patients with Sarcoidosis can be completely asymptomatic, others may experience severe symptoms that can significantly impact their quality of life. Asymptomatic patients have usually been diagnosed only accidentally when they needed a chest x-ray for a different illness.

For symptomatic patients, the symptoms they experience will depend on which organ is affected. For instance, patients may suffer from uveitis, blurred vision, and eye pain if it affects the eyes. However, patients may also suffer from common symptoms like fatigue, fever, night sweats, weight loss, and swollen lymph nodes regardless of the impacted organ.

In many cases, sarcoidosis goes away on its own without treatment but symptoms can be severe in some cases. For example, if sarcoidosis affects the lungs, it could lead to significant scarring and fibrosis of the lung tissue, making it difficult for the person to breathe and resulting in respiratory failure. Similarly, if sarcoidosis affects the heart, it could lead to heart failure or arrhythmias.

Sarcoidosis can be challenging to diagnose because its symptoms can mimic those of other conditions, and there is no single test that can definitively diagnose the disease. Diagnosis typically involves a combination of tests, including physical examination, blood tests, imaging studies, and biopsies of affected tissues. In some cases, doctors may need to perform multiple tests over time to confirm a diagnosis.

Additionally, because sarcoidosis can affect different organs, it may require the involvement of multiple specialists, such as pulmonologists, dermatologists, and rheumatologists, to diagnose and treat the disease effectively. Early detection of sarcoidosis is also crucial since it allows for timely treatment to manage symptoms and prevent complications. However, it can be challenging to diagnose because the symptoms can be nonspecific and can mimic other conditions, leading to misdiagnosis or delayed diagnosis. As a result, patients may undergo multiple tests and evaluations before receiving a correct diagnosis.

Help us spread awareness about Sarcoidosis so that more people will become aware of possible symptoms which can help in diagnosing this disease early. And if you or someone you know is affected by Sarcoidosis, join our free online community called Living with Sarcoidosis Patients Support Community and find people who truly understand what you’re going through.

1 post – 1 participant

Read full topic

Ben Munoz – October 31, 2019

When we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising: each of our “mods” does their job in their own way! Some are very active in the conversation, and others take a more hands-off approach, intervening only when there might be a problem.

We think that’s one of the ways our forty-some community network is special. Each community reflects the needs of members and the personality of its moderators. How good is that?

That’s why the best people to speak about being moderators are the Moderators themselves:

PSC community has been very much a rewarding experience for me. To be going through a life-threatening illness and to be able to share with others going through the same things that has done well for you, to gain insights into others going through similar circumstances was invaluable to me pre-transplant.

— Mark, LivingwithPSC.org

Being a moderator means its own set of wonders and rewards:

The other thing that constantly amazes me is how we are able to help people all around the world, support them, even help them with their emotions, through the use of bare, written words. No gentle tone of voice, no speaking gently, just able to be there, use that narrow means of communication which is the written word to catch people who are falling and offer them some support. I’m amazed how effective that can be, though I often put quite a lot of thought into what I say and how I phrase things, in order to try to get that calm, supportive tone of voice across.

— DickD, AVMSurvivors.org

When we asked them about some of their “trade secrets” we heard things like this:

… quite often I think of other people in my forum who I know have gone through the same experience that someone writing in front of me is going through and I openly or surreptitiously invite that other person to join the conversation.

— DickD, AVMSurvivors.org

“Is it rewarding?” we asked. That one’s simple!

“Yes.”

“Yes.”

“Yes.”

“Why should members consider being a moderator?” Quite honestly, we weren’t prepared for what we got from one of our veterans, Moderator Moltoub of BAFSupport.org (Brain Aneurysm Foundation). And we weren’t prepared to edit it either!

So here it is. In its glorious entirety:

Do you have the right stuff?

When I first started out on the BAF support group, Ben’s Friends had recently been asked to step in and help the group. My year’s promise to my life-saving Neurosurgeon (Dr. Stacey Wolfe) had ended and I was looking for information and support. There was no physical support group anywhere near me. If it had not been for the moderators at that time, I wouldn’t have any support group today other than my family.

Why is having a healthy mindset community so important for a community of rare diseases? With all the obstacles each of us face, we need someplace to vent in a safe forum, a place to learn, to see that others face difficulties in similar circumstances. To understand that though we may have been thrown a curveball, there are folks who have learned with attitude and fortitude to slam it out of the park.

It’s important that we, as moderators, have attitude and fortitude. It’s important that we don’t isolate other members because of all the important things which make us human. Some of those things are religious beliefs, orientation…you know, all the things that say “we don’t discriminate”. It’s important that we don’t jump on the latest snake oil cure and really help our members look at the evidence-based facts. Mostly, it’s important that we understand that our members are at different healing periods and they haven’t read all the posts made over the years.

For me, being a moderator gives me a sense of purpose. I absolutely enjoy watching members grow and work through their grief and confusion. Our groups are often like an extended family. Some of the members are excellent researchers and can cite research or articles, some are excellent at providing emotional support, some are excellent at calling a spade a spade. Sometimes, there is that family member that you just want to not invite for Holiday dinner next season. Then the group steps in and we get to read a lot of healing strategies.

So why should you become a moderator? A few hours a week spent helping others is a positive goal that we all should strive for. Because you’re probably doing the work as a member of your group and don’t even realize it. You’re the one that responds to the odd question, the member who posts and you reply, the one who says You can do this! The one that thanks the moderator in your group. Believe it or not, you will feel better for helping others both physically and mentally. Stanford has an entire department working on the virtues of helping others. You should become a moderator because you’re the helper in the family.

And if you should agree to take this mission, you might one day get to meet Seenie, TJ, Ben, Sharon, Merl or any of the other moderators in your group or heck, in Ben’s Friends!

Please contact ModSupport@bensfriends.org if you’d like to take a chance, take that first step forward, just say yes!

— Moltroub, BAFSupport.org

And that’s the last word.

1 post – 1 participant

Read full topic

Ben Munoz – August 15, 2019

We did It! Ten Ben’s Friends members traveled for more than 500 miles on foot and afloat to raise awareness and to raise money to start new Ben’s Friends Communities. This proves that although “WE HAVE RARE DISEASE -RARE DISEASE DOESN’T HAVE US”.

We started the night before departing for Glacier National Park.

McKenna caught her first West Slope Cutthroat Trout

You Can’t Rollerskate in a Buffalo Herd!
Nothing cooler than running into the main herd at the National Bison Range. Nothing WORSE than to have a tire blow out in the middle of the herd and change it with this suspicious fella supervising:

A bison roaming at the National Bison Range

Then we meet our camp mascot, George (who never left us).

Could be because our camp Cook was amazing – She even made cinnamon rolls one morning!

Or our Hilne trail Mascot “Iris” who kept a good eye on us:

Then there is always the detailed NPS Maps showing you the best place to ford the Flathead river (not).

But Avalanche lake was spectacular!

Awesome view at Avalanche Lake

Always be prepared to change your route though

Tom in the midst of Bears Zone

You might even find something like this:

Magnificent view

Or this:

Or even this:

Speaking of Bears, Seenie left with paw prints on her back window and Juli with scratches on the hood of her car that appeared during the night. Me THINKS they had a secret stash of food???

The water was low but we still managed to find some rapids (our whole team minus the little ones and their Mom).

This year’s trip was a success and we are already planning next year’s. We are thinking someplace with hot springs. We met our mileage goal but fell a bit short of our financial goal. But there is still time for you or your network to participate at:

Click here to support Foot and Float to Build 10 New Communities organized by Ben’s Friends…

1 post – 1 participant

Read full topic

Ben Munoz – November 1, 2019

I remember talking, not so long ago, with one of our AVM veterans. He has been battling this disease for 41 years now. When it was first discovered no one within 500 miles knew what it even was, let alone how to treat it. He says that it was a very scary time. Not only because of major surgery as an 8th grader but also because that is what I call, “rather rare.”

Imagine, if you will, that 8th grader, well into the school year, dealing with all of the middle school insecurities, suddenly finds out that he has this rare “thing.”

And no one knows what it is. Let that sink in a minute. Imagine you are the 8th grade student getting all sorts of awkward questions at school and no one understands. “What is it?” “They think it’s called an AVM.” “What’s that?” “They don’t know.”

“Mr. Smith, I need an excused absence form. I’m going to not be at school next week,” “Oh why…… Oh yeah, that thing.”

“That’s right, at a time in my life when I’m like 99% of all American middle schoolers and I just want to fit in, I don’t fit in.” If I had surgery for a broken finger, I’d fit in. We talked about the whole issue of fitting in and it went much longer than the paraphrased snippets I’ve got here.

“But I’m ‘rather rare.’ In a world full of Quarter Pounders, I’m a veggie burger. That’s rare.” But that’s the beautiful thing.

If the AVM Survivors Group had been up and running, this member would have been able to tell me his story without the painful memories of not fitting in. Let’s face it, not fitting in gives a patient and their family a whole additional area of pain.

I am pleased to tell you about something that we are excited about. McGill University near Montreal is a very involved and comprehensive teaching hospital. They have a “Rare Disease Interest Group” that was formed by med students for med students. I could take the next three hours and tell you some of the things they are doing, but I won’t.

Their “Rare Disease Interest Group” has an overriding goal of helping those who are suffering from rare diseases to get the support and connections that they need. Because I think that we can all agree that when there is support and connections, the outcomes are almost always better in some way.

We are working with the RDIG to coordinate these possibilities but it is exciting and we are truly grateful for both the work McGill has already done and is doing and the partnership which could truly help both organizations. Imagine, a medical field where the staff is concerned about the whole patient. The possibilities are endless.

1 post – 1 participant

Read full topic

Clasina Field – November 1, 2019

You must be wondering what Seenie has been doing these days. Well, I’ve been building our Google Classrooms and library where our Moderators and Interns will be able to learn the skills and tricks of the Moderator Trade. Right now, I’m about to stock our library with reading material and things like Slide Guides.

It will all be set up for independent learning, at your convenience. Of course, there are no grades and certainly no report cards. But there are things like questions and quizzes that can be submitted if you want to check your knowledge. When you do those, there will be a record of your progress, but whether you do those is up to you. Most things posted in the classroom have an option for questions and discussion, so if there’s something that you want clarified, there’s a place right there where we can discuss it without switching to email or another web address. TJ and I will be the so-called “teachers” and we can be reached in the classroom whenever you need us, 24/7.

There’s a steep learning curve for me, this high-tech paperless classroom, but it’s really exciting and I’m enjoying it! If you would like to have a preview peek inside (and maybe do some testing and troubleshooting for me) I’d love to have you join us. Let me know via your @bensfriends.org email and I’ll send you an invitation to the classroom. Eventually, all of our mods will be enrolled.

As high-tech as our electronic Ben’s Friends Classroom is, we decided to keep the exterior very traditional looking. (I think it’s really pretty, and notice the picnic tables for socializing!) We hope that you’ll like what we’ve done and that it serves all of you well.

Ben’s Friends Virtual Classroom

1 post – 1 participant

Read full topic

Ben Munoz – November 9, 2019

John Stamler, Ben’s Friends’ treasurer and a rare disease survivor himself, had a conversation with Garry Turner in the Episode 81 of Value through Vulnerability podcast.

John shared his inspiring work as a mentor to startups and his admiration for the entrepreneurs he works with who are so passionate about what they believe in.

He also talked about his experiences related to a rare heart defect which eventually led to his joining Ben’s Friends as a patient member in 2010.

Surviving an Open Heart Surgery and Joining Ben’s Friends

John shared that he was diagnosed with a rare heart defect in 2009 and went to more than ten doctors located in different cities such as London, New York, and Boston. He, however, did not feel treated well.

In March 2010, he finally met a surgeon at the Cleveland Clinic, Dr. Tom Mihaljevic, who has already seen a case similar to his condition.

He underwent an open heart surgery in May 2010 and then joined one of Ben’s Friends communities in June. And only a few months later, he ran a marathon in three and a half hours to raise funds for our cause. (Only after being given a full clearance by his doctor, of course.)

To give a clear picture of what Ben’s Friends communities are, John told Garry, “it’s all about connecting. Imagine you and me sitting in different locations. I’m diagnosed with, let’s just say, my heart defect. I’m scared, you welcome me, you make me feel like I’m not alone anymore.”

John considers our communities as almost like a lifeline to connect with people with a similar condition. The community helps people go through their day and he is grateful that Ben brought him in.

Our Safe and Secure Communities

John proudly shared in the podcast that our communities are safe and secure. People never have to give their full name when they join as a member.

He explained that it was really intended to protect the people who are sharing heart-felt stories. They don’t give out their real names so no one can find their information.

As John explained, “community stuff, when done right, can be very powerful, inclusive, encouraging and supportive.” And he feels so blessed that he learned this from Ben’s Friends which he was able to pass on to the other organizations he is working with.

1 post – 1 participant

Read full topic

Sascha Gallardo – January 14, 2020

Members of Ben’s Friends patient communities can soon take advantage of a state-of-the-art technology that will enable them to manage their medical information in a secure multilingual digital tool, give them access to an online referral service for physicians and clinics, and let them participate in research that will benefit the rare disease community.

Ben’s Friends is partnering with Backpack Health to provide a custom data management app to its patient-members and their caregivers.

Initially targeting the Psoriatic Arthritis and Lyme Disease communities, this partnership is set to eventually come up with a customized tool for each of Ben’s Friends patient communities.

This app will be made available for free on iOS, Android and web.

https://www.youtube.com/embed/mMFuR5e94ns

Finding the best partner

Co-Executive Directors Clasina Field and Tom Lambdin have been on the lookout for this kind of technology for several months, attended no less than three big conventions, and vetted dozens of possible partners until they have found the one that meets their standards.

The idea of creating Backpack Health came out of its founders’ experiences with addressing a loved one’s health care needs. Mark and Diane Goldman’s son and Backpack Health’s CEO Jim Cavan’s niece had difficulties managing their health records especially when having to seek medical care while abroad where tons of information has to be translated into a foreign language.

“Jim and his team created this tool because of what a loved one had to go through. We know how close meeting the patients’ needs is to their heart,” Clasina said talking about the partnership.

“We want to partner with someone who will provide service to our members from the heart. And we found that in Backpack Health. We want only the best for our patient communities.”

Ben Munoz, President and Co-Founder of Ben’s Friends, underscores how the team values patient education. “At Ben’s Friends, we promote education and awareness, and encourage members to take control of their health information. It’s important to us that Backpack Health values the same.”

Patients’ benefit from the app

To really be able to find out how invaluable this tool is before rollout, Tom and Clasina took the lead in using Backpack Health.

Clasina recently signed up to Backpack Health before going on a trip abroad. “I was leaving on a trip, which gave me the ‘push’ I needed to complete my Backpack profile. When I had finished entering my basic ‘share card’ information including detailed medication info, and my provider details, I installed the unique link to my Backpack record on my phone lock screen. It’s all set up. I was ready to travel in no time!

Had she known Backpack Health earlier, she wouldn’t have had to go through a difficult experience while in a country where English is not the first language.

“One time, while in Germany, I was feeling poorly and I went to a hospital where the doctors barely spoke English. I tried to remember, and then failed to have them understand which medications I was taking. What a challenge, especially if you aren’t feeling well. I would have LOVED having my health record share card instantly translated into German.”

The Backpack Health could have also been really helpful during Clasina’s recent trip to the UK.

“The other time, while in the UK, I had a terrible Meniere’s attack. That’s extreme dizziness and non-stop vomiting and retching. The paramedics made me give my medical information to a lovely person on the phone while I had my head in a vomit bag. If only I could have shown them the access codes, they would have had everything I decided to share right there.”

Tom, on the other hand, is set to have a heart surgery which is currently a very new procedure. To qualify for this, patients need to meet stringent requirements.

Because of Backpack Health, the pre-op process has been a breeze.

“To gather all the records and get them evaluated would have been weeks, if not months, to process. The Backpack app allowed me to upload EMR from a dozen sources with like 12 mouse clicks.”

Tom received replies from the health institutions in as fast as one hour after submitting the requirements through the app. He also didn’t have to go through the hurdle of setting up appointments just to sign countless releases. Instead, it was the heart institute who called him to set up a pre-op appointment.

Making the app available to other communities

According to Jim, creating custom tools for the members of Ben’s Friends is something that the Backpack Health team is proud of and looks forward to.

“ Psoriatic Arthritis and Lyme Disease can be challenging to manage, and we are proud to tailor our digital tools to support both individuals and caregivers in their journeys with these conditions and look forward to working closely with Ben’s Friends to create additional support groups for its community members.”

Talking about the timetable for this project, Clasina said, “We hope that we’ll have custom versions of Backpack available to all of our members early this year. I’m really excited about it.”

1 post – 1 participant

Read full topic

Sascha Gallardo – January 20, 2020

Ben’s Friends created a user-friendly online training facility that makes learning about providing support to patients simple and easy. Dubbed as Ben’s Friends U or Ben’s Friends University, it makes use of Google Classroom to create one virtual classroom for Moderators and another one for the Interns.

Using this G-suite tool, the Ben’s Friends team is able to build a “library” of links to learning materials such as documents, websites and video resources. Interaction between the teachers and students is also easy because the tool allows participating in learning activities, including evaluation, within the website just like inside a physical classroom.

At present, the Ben’s Friends U Moderators’ classroom contains guides about what Moderators do, how to approve new members and the values of every Ben’s Friends Moderator. Users can also learn more about chronic conditions and mental health so they are better equipped when communicating with members.

The Interns’ Classroom, on the other hand, allows users to learn basic member skills like creating a new account, posting a reply, and navigating a community homepage. Materials about Discourse, the software used to run the patient communities, are also available.

Who can use these classrooms?

The classrooms are exclusive and only those who have been invited to participate can enter.

Essentially, Interns and Moderators will be able to go to their classroom web address and do reading, submit assignments, message the instructors, ask questions and have group discussions all in one place.

The work is all individual progress so the Interns and Moderators visit and work in the classroom at their own pace and convenience. Learner progress can be easily tracked, and modifications can be made to the Ben’s Friends U content as the need arises.

Timetable and future plans

Co-Executive Directors and Ben’s Friends U instructors Clasina Field and Tom Lambdin started this project last October. With the help of some Moderators and Ben’s Friends President and Co-founder Ben Munoz, the alpha testing went on smoothly and the beta stage started within a few weeks.

The team is now applying some finishing touches and the Moderators and Interns can soon fully enjoy these learning facilities.

Ben is surely very proud of what the team has built. “The reason we are the #1 patient support network on the internet is because we have the best mods! This training and coaching is a big part of that.”

On his part, Tom cannot wait to see how this project further improves the already superb performance of the team. “The opening of the Ben’s Friends U campus is really exciting. Our highly skilled Moderators and enthusiastic I nterns are instrumental in keeping our communities the safest and most supportive on the internet. This will surely bring our work to the next level.”

Asked about the long term plans for Ben’s Friends U, Clasina said, “Eventually, we hope to introduce video instruction and live conferencing to the classrooms. These innovations we’re doing make collaboration among team members so much easier. And that is big for a team that interacts only virtually.”

1 post – 1 participant

Read full topic