At first glance, Caryn is living an enviable kind of life: she is 56 years old, living in South Florida and is the Director of Imaging Services for a national radiology group. In the short time, I spent talking with Caryn, her positive disposition and tremendous strength were evident through all that she said. So, while she certainly seems to be living a great life, I suspect that not many people know how hard Caryn has fought to build this life or how much she continues to overcome to achieve it. At age fifty, she was diagnosed with neurocardiogenic syncope (NCS) after a harrowing medical battle that involved misdiagnosis, emergency surgery and nearly losing her life. Even more, all of this happened not long after she overcame thyroid cancer.
Caryn’s syncope began in childhood. She regularly passed out at doctors’ offices and during anxiety-evoking experiences. She was diagnosed with epilepsy at age sixteen and was given anti-seizure medications. She continued for nearly three decades believing she had epilepsy. Then, in 2003, she was diagnosed with thyroid cancer. Her thyroid was removed, but cancer returned two years later. She recovered after a second major surgery and months of rehabilitation. By age 45, her cancer was in remission and she thought her battle with illness was mostly over. However, she discovered she was originally misdiagnosed with epilepsy during a routine neurology visit, and the physician proceeded to help her off the anti-seizure medications. She did not experience any seizures after that, though her syncope-related symptoms that began in childhood remained.
In 2011, a particularly difficult syncope episode caused her heart to stop, which was followed by several more similar experiences. She had a pacemaker surgically implanted to stabilize her heart rate, but she felt severely ill shortly after the surgery. When she returned to the hospital, she found she had contracted MRSA accompanied by pulmonary embolisms, an infection in her heart and fluid in her lungs. Thankfully, she recovered after months of medical care and rehabilitation, but not without difficulties. She sensed the panic in the eyes of her physicians and family members during her battle with MRSA, and she knew she was near death. Even as she recovered, she feared losing her job as an MRI technician because she could not be around the equipment with a pacemaker. Her story began to turn when she saw a cardiologist who was able to diagnose her with NCS at the end of her first appointment. As he handed her a pamphlet about the condition, she could not believe that her extensive medical journey was culminating in a diagnosis that was “just that simple.”
Caryn’s diagnosis was empowering because she finally had the knowledge to help herself cope. She has learned to prioritize activities that are important to her, like exercise. She knows she will be tired after workouts, and she now trains based on her heart rate. She did lose her job as an MRI technician, but this led her to build new dreams and now has a career she loves. She knows to talk herself through the particularly difficult moments and listens to her body when she needs to lay flat. Her experience of dysautonomia has taught her to live in the moment, and to use her own voice to take care of her needs. She has also learned to keep a small circle of support around her including family, friends and supportive colleagues.
Now, with a diagnosis of NCS and her cancer in complete remission, Caryn reflected on her experiences: “I thought cancer was hard until this hit me.” Cancer is hard. Individuals who experience it are heroes in their own rights. But, Caryn’s comment made me think—what component(s) of her NCS experience made it harder than her cancer experience? Caryn shared that there was always the possibility that her cancer could be cured, that same possibility does not exist for NCS. She has to think about NCS every day, and every day she knows NCS will be with her tomorrow.
As I continue to resonate on this point, I see that everyone’s experiences of illness, no matter the origin, are harrowing in their own way. But, one major dissonance I can see between the cancer community and the dysautonomia community is the level of awareness, research and education about the respective diseases. I hope the future brings a cure for cancer just as much as the next person, yet I also see the tremendous strides our society has achieved regarding cancer treatment and prevention over the last several decades. This type of relative success in the cancer community is motivating and inspiring. Perhaps one day, with continued efforts in awareness and education, dysautonomia will be better understood by the medical community and the general public, too. I hope such awareness and education will minimize the misdiagnoses, improper medication treatments and surgical complications experienced by many dysautonomia patients. Until then, we will continue to share the heroic and inspiring stories of individuals, like Caryn, to work toward that goal.
From DINET: If you would like to be considered for a future Meet the Member article, please email firstname.lastname@example.org
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I thought I was there, that I had reached the calm point where knowledge and experience were making it easier to handle the endless symptoms that go on 24/7/365. Life goes on, and I had to learn to manage it; water, electrolytes, healthy food, exercise, medicine, self-education, and introspection all combined to help get me to where I am physically and emotionally stronger though attacks. My EP, with a wink in his eye, calls them my neuro-cardio-vaso-vagaly-things. We both then smile because I don’t collapse so much anymore.
I began telling myself that I was content. That an ideology of ‘what can I do’ was okay and would quickly replace ‘this is what we’re doing today, and then we can do this tonight and that tomorrow.’ I had already accepted that I could not do most of my old work, and I cut down to what I can manage. The amount of energy or non-foggy thoughts you can crank out does affect your life. But I am lying to myself when I say I’d be doing less in my 60s anyway--didn’t I read that 60 is supposed to be the new 40? If I found acceptance, why am I not enjoying myself?
I walk the dogs late at night and speak to the heavens asking them the hows, ways, and means of my life. The answers come through natural shows of clouds parting before a full moon, with so many geese flying across the sky I could feel their wingbeats, the sounds of mockingbirds singing at midnight, the sound of the wind whispering through the trees; I even have been graced with shooting stars. And in all of that, there is no answer for me but to acknowledge that the world is still beautiful after dark. I tried going down to the beach and screaming at the ocean. It does nothing except give you a sore throat and cuts on your feet from the clam shells. I might as well pound sand.
Acceptance wasn’t working for me. It’s been something nice to tell doctors and friends who want to hear anything about getting better. I think it makes it easier for them, as most people don’t understand much about dysautonomia, they only know it is bad and want you to get better. And, when you run into them at the store, you smile and say, ‘Oh, I’m doing a lot better.’ But then you’re nearly fainting at the register five minutes later and holding onto the cart handle for support; they don’t see you get through it, go home, and crash on the couch before you can empty your bags. This is unacceptable to me. I want my energy and my life back.
I was out in the garden when I made the decision to un-accept acceptance. I made this determination while looking at the state of my garden. Some of the beds have been fallow since my symptoms began four years ago and are looking more like a young forest than the once fertile and well-tended rows of tomatoes, veggies, and herbs. Some of the beds are in transition though, and I was able to prune a few back and get out the weeds before the heat of summer came on. I have partially restored them, and I struggle to keep the weeds out. But the zinnias I sowed are starting to bloom and attract butterflies. Of all of the gardens, there is one bed that I am content with—it’s been cut back, reworked, replanted and sown with wildflowers--it is thriving and growing and blooming.
It was these three beds that brought me to my decision—the wild young forest, the in-between bed fighting off weeds while still blooming bright, and the finished bed where the wildflowers are healthy and abundant, bees and butterflies are busy at the blooms, and the weeds don’t have room to sprout and take hold. To me, my own backyard became the symbolic comparison of my struggle and effort to get symptoms under control. The wild and uncontrolled, alongside that which is still in work and can go either way if not kept in check, bordering that which is satisfying and right and good. I made the decision, that while I can, and for as long as I can, I will not be complacent and sit back. I must tend my life as I tend my garden. I know I can control some of it and each time I make a little effort I get more under control. Water, nutrients, and fresh air can make a big difference in how I look and feel too. I am ready to challenge myself to improve; I am not prepared to accept that my life has gone to the weeds.
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Age specific tools for managing chronic illness
I’m no expert in the field of chronic illness. Nor am I any type of medical professional. However, I AM an older adult with eighteen years of experience in dealing firsthand with a chronic illness (dysautonomia). I’ve been asked to share my experiences, observations, and opinions. I’m happy to do so in case any of it may help someone else.
In my opinion, when it comes to having a chronic illness it matters where you are located in your Life Cycle. By that, I mean that your current place in your “Life Timeline” (childhood, young adulthood, middle age, older age) is a factor that impacts how you experience and cope with your chronic illness. Each phase we go through in Life can provide us with age-specific tools that may serve us in good stead during a major upheaval. I base this personal opinion on my own first-hand experiences as well as upon my observations of younger people I personally know who have a chronic illness.
There are probably advantages (and disadvantages) to being in each age group when it comes to experiencing a chronic illness. I am, of course, more familiar with the advantages of being middle-aged and older-aged during a chronic illness because I didn’t begin experiencing mine until I was 40 years old. It didn’t severely disable me until I was 56 years old. I have thus lived the experience of being challenged by chronic illness later in life.
One observation I would make is that by age 40 I had experienced many of Life’s ups and downs. We all experience at least some of them: Love, rejection, marriage, divorce, birth, death, the thrill of getting that new job we wanted, the melancholy of leaving an old job where we had good friends, happy beginnings, sad endings, etc. By the time I became seriously ill, some of my own Life “ups” had been magnificently exhilarating. Some of my Life “downs” had been the scorched earth variety of devastating. However, both the ups and the downs carried value because I had learned important lessons from each. For purposes of later managing what was to become my chronic illness the downs arguably contained the most important lessons because, if you think about it, our most profoundly sad Life experiences involve loss and the Life Lessons of how to cope with it.
Knowing how to cope with loss and to already have strategies in place for dealing with it when it comes knocking can be an extremely valuable tool to have in one’s toolbox. This is particularly true when one begins dealing with the loss of the life one had as a healthy person. In my opinion, a person like me who experiences the onset of chronic illness later in life may well have this valuable tool available in their coping toolbox.
Another difference appears applicable to those of us who do not become chronically ill until middle age: In my case, by that stage in my Life Cycle I (like most of us) had not only had the experience of one or more Life losses, I had also survived those losses. There’s a certain self-confidence born of surviving a bad experience or loss. Once we’ve survived one bad experience or loss, lesser bad experiences and smaller losses can seem less daunting. We now have a measuring stick (the terrible experience we survived) against which to measure subsequent bad experiences. Speaking for myself, younger me didn’t typically have the self-assured attitude enjoyed by older me of “I’ve survived some pretty terrible losses in the past. I, therefore, KNOW I can survive this.” Older me is more serene in the knowledge that if past losses haven’t defeated me, new losses certainly won’t either. This provides an additional tool for the coping toolbox that we can employ in managing the onset of a chronic illness.
I have also realized that experiencing the onset of chronic illness later in life has meant that I had previously had the opportunity to experience many major life events as a healthy individual. In my case, prior to being stricken with a serious illness, I had already had an opportunity to pursue my dream of putting myself through college and law school. I had likewise had an opportunity to experience marriage and to have my babies. I had successfully pursued a career I enjoyed and had even achieved what was for me my ultimate Dream Job. I had also learned to ballroom dance and to excel in a sport I enjoyed.
Although many of us with chronic illness will naturally grieve the loss of the more physically capable life we have left behind, I did not experience a sense of having “everything” taken away from me when I became disabled at an older age. This is because I had already had a chance to pursue some goals which had felt important to me and to live some Life while enjoying good health. I had gotten to DO some things I had wanted to do. Not to sound trite, but as an older person, I was able to fully appreciate the Dr. Seuss saying of “Don’t cry because it’s over. Smile because it happened.” This has been another useful coping tool for the chronic illness management toolbox.
As an older person, I had also had the opportunity to get to know myself pretty well by the time my onset of chronic illness occurred. I know my individual quirks. For example, younger me wouldn’t know (as older me does) that if I silently engage in artistic, creative endeavors for a few hours, it will help calm me down if I’m feeling upset. As with many older people, I thus have tried, and true coping mechanisms I know will see me through challenging times. Older me knows just what to do to soothe my soul when I’m feeling battered by Life. This is another tool in the coping toolbox which is arguably “age group specific.”
In my opinion, all of these factors add up in such as way as to provide inherent age group specific tools for those of us who are older when we cope with the onset of disability and chronic illness management.
Younger people likewise arguably have age group specific tools in their coping toolboxes. Although I do not have firsthand, personal experience with such tools (since my onset of chronic illness occurred later in life), I have observed them in young adults and children I know. For example, teenagers and younger adults may be better connected with their people. This is because they are arguably more likely than we older people to communicate frequently with others through computer and smartphone technology. Such technology enables a physically limited person to “stay connected.” with others 24/7 if they’d wish.
Teenagers and younger adults also possess an online savvy which may additionally provide an enhanced ability to research and better understand the nuances of their medical conditions. Such research capabilities may provide a person with a better sense of control over the situation. They may also be more predisposed to take advantage of online support groups.
A teenager or young child may be more likely to have a built-in support system of family living under the same roof to assist them that an older individual may or may not have. This can be an extremely important tool in one’s toolbox, especially if the family proactively helps the teenager or child prepare for adulthood by ensuring he or she learns about appropriate assistive devices and management strategies. Any medical provider worth their salt will tell you that when it comes to treating medical illness, children are not simply smaller adults, women are not simply smaller men, and the elderly are simply younger adults with gray hair. What we can easily lose sight of is a corollary to that: The day to day coping strategies for (and management of) one’s chronic illness can likewise be very different experiences for these individual groups as well… especially with regard to where we are in our Life Cycles. Each age group brings its inherent situational strengths to the table in coping with chronic illness.
It seems to me that if we of different age groups can find a way to proactively reach out to one another as mentors, all of us will benefit. If there were an organization to facilitate and coordinate such mentoring, in my opinion, the quality of many lives would likely be improved.
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The term self-care is becoming trendy, which means you may have heard someone talk about it at some point. What is it though? Put simply, it’s caring for yourself, just like it sounds. So many people spend the whole day making sure everyone around them is taken care of while continually bumping their own care down lower and lower on the to-do list. Essentially, the more time put towards self-care, the longer you can go between burnouts.
I used to work for the State Police, and under special circumstances, troopers could provide a gas transfer to a citizen. You see, if the trooper had not made sure that his or her own tank was full first, then they would be completely useless in helping the citizen in need. To be the very best mom, sister, daughter, wife, employee, and friend, it’s important to take time to fill up your tank too. Otherwise, there is nothing to give to others.
Besides having more to give to others, there are health benefits too. Let’s brush up quickly about dysautonomia, which is dysfunction of the autonomic nervous system. Within the autonomic nervous system are two parts, the parasympathetic nervous system, and the sympathetic nervous system. Those of us who suffer from different forms of dysautonomia have a broad goal of activating the parasympathetic nervous system in a healthy way. In fact, research suggests that plenty of self-care activities can enable your parasympathetic nervous system (PNS). Activating your PNS places your body into a more restful and rejuvenating state. This can strengthen your immune system as well as make healthy strides towards calming the dysfunction of the autonomic nervous system. Therefore, more self-care, possibly fewer dysautonomia flares, as well as fewer colds and cases of flu interrupting your year.
Self-care can be difficult at times because it means saying “no.” It means saying you can’t fit in that other meeting and take on that additional project. It means you can’t head up every club and run all the fundraisers. At the end of the day, you need time for your health- physically, emotionally, and spiritually. This may look different to different people, but it’s important to learn which activities help to refocus you and ground you, and what invigorates you and rejuvenates you.
Here are a few ideas that might be a good fit for you, depending on your current needs. As always, check with your doctor before starting new physical activities.
● Plant a garden and spend time in it. Get your hands dirty, literally.
● Rearrange your furniture. Your mind will continue to be stimulated until you are used to the new setup.
● Learn how to make a budget that works.
● Start journaling.
● Find a book that interests you and then make time to read it.
● Learn about your local history.
● Revisit an old hobby.
● Learn to sew, cross stitch, crochet or quilt.
● Tidy up a small space. Organizing your space can organize your mind.
● Play a new board game.
● Visit a bookstore.
● Read a magazine.
● Do a puzzle.
● Write a poem.
● Make achievable daily goals.
● Create an inspirational collage.
● Unfollow toxic friends on social media.
● Try out a new exercise class.
● Go to bed early.
● Go for a bike ride.
● Spend time with your pets.
● Do something kind for someone else.
● Bake something for fun and share with a friend.
● Take a bubble bath.
● Buy yourself flowers.
● Visit an antique shop.
● Try a new hairstyle.
● Wrap up in a cozy blanket and drink tea.
● Look at the stars.
● Light a candle.
Schedule some time for YOU and try out some of these activities. Make time for your mind, your body, and your soul. You deserve it!
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Open Recruitment Studies
Recruiting: The investigators propose to conduct a safety, tolerability and early proof of concept efficacy study of phosphatidylserine in patients with FD. The long-term goal is to find an effection nutritional therapy that will improve the quality of life for patients with FD and alter disease prognosis Contact & participation information is available - https://clinicaltrials.gov/ct2/show/NCT02276716?cond=Dysautonomia&rank=5
Recruiting: PET Imaging Study of Neurochemical and Autonomic disorders in Multiple System Atrophy (MSA) from the University of Michigan. This study aims to better understand the patterns and timings of nerve degeneration relatively early on and how it affects symptoms and progression.
Eligibility: 30 - 80 years old
Gender: AllSubject: diagnosis of MSA or probable MSA of the Parkisonion subtype (MSA-P) or Cerebellar subtype (MSA-C), Subject must be willing and able to give informed consent. Normal cognition as assessed by MiniMental State Examination
Timeline: Less than 4 years from the time of documented diagnosis See study online for exclusions and further information. https://clinicaltrials.gov/ct2/show/study/NCT02035761?recrs=ab&cond=Dysautonomia+Orthostatic+Hypotension+Syndrome&rank=4 Contacts: Arijit K Bhaumik, B.A. CCRP, 734-936-8281 email@example.com Edna Rose, Ph.D., RN, MSW, BC, 734-936-7359, firstname.lastname@example.org Estimated Primary Completion Date: July 2018
Recruiting: A Study of Pyridostigmine in Postural Tachycardia Syndrome.
This is a 3-day study being conducted by the Mayo Clinic comparing pyridostigmine vs placebo in the treatment of POTS. Researchers expect pyridostigmine to improve tachycardia and stabilize blood pressure.
Eligibility: Diagnosis of Postural Tachycardia Syndrome using the following criteria:
Orthostatic heart rate increment greater than or equal to 30 beats per minute (BPM) within 5 minutes of head-up tilt.
Symptoms of orthostatic intolerance. These include weakness, lightheadedness blurred vision, nausea, palpitations, and difficulty with concentration and thinking.
Both criteria must be fulfilled
See study online for exclusions and further information http://www.mayo.edu/research/clinical-trials/cls-20128843 Mayo Clinic location, Rochester MINN, Principal Investigator: Dr. Philip Low Contact: Tonette Gehrking, CAP, 507-284-4462, email@example.com
Recruiting: The Safety and Tolerability of Kinetin, in Patients with Familial Dysautonomia The overall objective of this study is to assess the safety and tolerability of administering kinetin in patients with FD. The specific aim of this proposal is to determine the safety of a once-daily dose of kinetin in patients with FD using a dose ascending titration and to determine the long-term safety and tolerability during 3-years of receiving a maximum tolerated steady state dose of kinetin. The investigators hope to also demonstrate early proof of concept that kinetin enhances the ability of the neuronal tissue to correctly splice IKAP mRNA.
Eligibility: Male or female 16 years of age and older, confirmed a diagnosis of familial dysautonomia by genetic testing, written informed consent to participate in the trial and understanding that they can withdraw consent at any time without affecting their future care. And the ability to comply with the requirements of the study procedures.
See study for more info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02274051?cond=Dysautonomia&rank=3 New York University School of Medicine Estimated Completion date: September 2019
Contact: Horacio Kaufmann MD, 212-263-7225,firstname.lastname@example.org Contact: Jose Martinez, MA, 212-263-7225, email@example.com
Recruiting: Two new studies open for patients with MSA The NYU Dysautonomia Center has 2 new clinical trials to test new drugs that are being developed for the treatment of OH in patients with MSA. Both compounds work by enhancing the body’s levels of norepinephrine. Both studies are also being carried out at the Autonomic Dysfunction Center at Vanderbilt University. NYU Dysautonomia Center and Vanderbilt are longtime collaborative partners in rare autonomic disorders.
Study 1: A Phase 2 Study to Assess the Effect and Safety of TD-9855 in Subjects with Neurogenic Orthostatic Hypotension
This Study is in collaboration with Theravance Biopharma R & D They are testing the acute efficacy and safety of a new compound (TD-9855) in improving blood pressure and reducing orthostatic symptoms in patients that have neurogenic orthostatic hypotension (nOH), which includes those with MSA. This study is also open to patients with Pure Autonomic Failure (PAF) and Parkinson’s Disease (PD) with NOH.
Eligibility: 40 years and older, All Genders
Diagnosed with symptomatic orthostatic hypotension due to Parkinson’s disease, MSA or PAF (ie.neurogenic orthostatic hypotension)
At screening, a subject must meet the diagnostic criteria of neurogenic orthostatic hypotension, as demonstrated by a > 30 mm Hg drop in systolic blood pressure (SBP) within 5 minutes of standing.
Impaired autonomic reflexes, as determined by the absence of BP overshoot during phase IV of the Valsalva maneuver, in subjects where Valsalva is performs as appropriate.
For the optional open-label extension study subjects must have demonstrated a pressor effect and completed dosing in Cohort 1.
Estimated completion date: June 2018 See study for further info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02705755 NYU Information sheet: https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/
Study 2: Norepinephrine Transporter Blockade, “Autonomic Failure”
This study is supported by The Food and Drug Administration’s Office of Orphan Product development. , We are testing whether we can repurpose an available drug (atomoxetine) as a treatment for neurogenic orthostatic hypotension (nOH). This study is also open to patients with MSA, pure autonomic failure (PAF), and Parkinson disease (PD) with OH.
Eligibility: 40 to 80 years old, any gender, with Neurogenic Orthostatic Hypotension (defined by a reduction of > 30 mmHg drop in SBP within 3 minutes of standing, associated with impaired autonomic reflexes as assessed by autonomic function tests.
Estimated completion date: July 2020
Contact: Bonnie Black, RN, 615-*343-6862, firstname.lastname@example.org Contact: Jose Martinez, 212-263-7225, Jose.Martinez@nyumc.org
See study for further info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02784535
NYU Information sheet: https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/
Recruiting: Vagal Stimulation in POTS - The Autonomic Inflammatory Reflex (Pilot 3) The purpose of this study is to investigate how the electrical stimulation of a nerve in the skin of your earlobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm.
Eligibility: Participants must be female between the ages of 18-45 diagnosed with POTS.
See Study for further information and exclusions: https://www.rarediseasesnetwork.org/cms/autonomic/6111 This study is a part of the Rare Disease Clinical Research Network and the Autonomic Disorders Consortium
Contact: Vanderbilt University Medical Center Nashville
Misty Hale CCRP, 615-322-2931, misty.hale@Vanderbilt.edu
Recruiting: The Big POTS Survey is still recruiting This study’s lead investigator is Dr. Satish Raj MD MSCI, Adjunct Professor of Medicine at Vanderbilt University’s Autonomic Dysfunction Center. Dr. Rah says that the information collected as part of this survey “will help us learn more about the possible underlying causes and risk factors for developing POTS, treatments, and the economic, educational and social impact of POTS on patients and their families.” Dr. Raj serves on the Medical Advisory Board for DINET and Dysautonomia International. DI is sponsoring this survey.
Why are EDS patients called Zebras?
Patients with EDS frequently call themselves Zebras, why? According to the Ehler's Danlos Society, it originated from something taught to medical students about diagnosing patients - "When you hear hoofbeats behind you, don't expect to see a zebra" In other words, look for the most common and usual, not the most unusual when diagnosing a patient.
The Zebra became the symbol for EDS patients because, as with most dysautonomia disorders, it takes years to gain a diagnosis because the patient looks too "normal" or seems too young to have so many ailments. Generally, it is unexpected and unusual. The Zebra symbolizes the idea that "when you hear hoofbeats, it really is a zebra".
For more information about Ehler's Danlos Syndrome, visit https://ehlers-danlos.com For information about POTS symptoms and treatments, visit https://www.dinet.org/content/information-resources/pots/
We can't stand without support. We can't do it as individuals. We certainly can't do it as people with dysautonomia. And we can't do it as an organization. We all need each other's help.
But there are so many worthwhile organizations, so many places needing help - why help DINET?
DINET is a validated, certified 501(c)(3) nonprofit organization. Guide Star, the world's largest source of information on nonprofits awarded DINET the Silver Seal of Transparency. Vetting DINET as an organization providing the public full access to its financial filings and managerial platform.
Volunteers moderate the forum - to guarantee patients a protected place to have discussion anonymously about your health and your experiences; to share your concerns, ask questions and be supported by a community of people who understand.
DINET goes where the work is needed. DINET belongs to the Rare Diseases Clinical Research Network working within their Autonomic Disorders Consortium. Why should you care? Because it gives you access to the information that is at our fingertips - literally. New research and recruiting studies are published on our homepage as they become available.
DINET is also a member of the Coalition of Patient Advocacy Groups. Chelsea Goldstein, one of DINET's Board of Directors will be attending the annual meeting in June to discuss ways to incorporate the patient's voice into the research process, as well as other issues related to the translation of clinical research to real life patient settings.
The 2017 Survey, along with the ongoing Surveys on Facebook, give our readers another way to have their voice heard.
DINET continues to support workshops and information sessions across the world with materials, videos, and in-person talks (when possible). Most recently, DINET provided educational materials about dysautonomia and POTS for two health workshops about invisible illness in North Carolina. An in-person presentation at a NH Hospital is scheduled for late May. The more we increase awareness, the shorter the time to diagnosis and the better the treatments of the illness will be.
We post information about living with chronic illness, latest news and discoveries about dysautonomia and related disorders on our site and daily on Facebook.
Volunteers personally answer every email we receive with the best answers we can find - on our site and through other organizations.
We care...truly. We are patients & caretakers and the information we gather, the connections we make and the support we provide is just as important to our health as it is to yours. We are a 100% volunteer organization - every one of us. We give our time, our energy (between naps) to do this because we really do care and we want to help.
If you would like to help DINET continue to stand, please consider making a donation and/or volunteering.
or email email@example.com with questions.
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The University of Alberta and McGill University released their findings for a new therapeutic agent that may hold the potential for the prevention of MS.
In the new study, according to the synopsis published in Medical News Today, the researchers examined tissues from donated human brains. They found that the brains of people with MS had very high levels of a protein called calnexin compared with the brains of people who did not have MS.
The team then used mice that had been bred to model human MS to examine the influence of calnexin in living creatures.
The study authors were very surprised to find that mice that did not have calnexin seemed to be “completely resistant” to MS.
Marek Michalak, from the University of Alberta said that he and his colleagues believe that these findings have identified a potentially vital target for developing future MS therapies.
Study:Calnexin is necessary for T cell transmigration into central nervous system First published 3/8/2018 by JCI Insight (Journal of Clinical Investigation), Vol 3, Issue 5
Authors:Joanna Jung, Paul Eggleton, Alison Robinson, Jessica Wang, Nick Gutowski, Janet Holley, Jia Newcombe, Elzbieta Dudek, Amber M. Paul, Douglas Zochodne, Allison Kraus, Christopher Power, Luis B. Agellon, Marek Michalak University of Alberta and McGill University https://insight.jci.org/articles/view/98410
Medical News Today By David Railton, published 3/14/2018 Fact checked by Jasmin Collier https://bit.ly/2GhF5FK
Neuroprotective Diet for MSA Patients (Multiple System Atrophy) Information from the MSA Coalition says that although the causes of MSA are still not known, daily food choices can influence certain components of the disease process - slowing or speeding up inflammation, degenerative protein accumulation, nerve cell destruction and decreased neurotransmitter levels.
The diet focuses on calorie restriction, low- protein and protein redistribution combined with an anti-inflammatory diet that includes high antioxidant foods.
From the MSA Coalition, https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet
FDA Authorizes Marketing of First Blood Test to Aid in the Evaluation of Concussion in Adults
The FDA approved the first blood test to evaluate mild traumatic brain injury (mTBI) commonly referred to as concussion in adults. The test called the Banyan Brain Trauma Indicator, is expected to be released for use in less than 6 months as a part of the FDA’s Breakthrough Devices Program.
The test promises to be a better indicator of trauma citing that most people with suspected concussion are examined and given a CT Scan to test intracranial lesions and tissue damage. However, in the majority of people evaluated, the CT Scan can not detect intracranial lesions. The blood test would give physicians a clear marker to indicate the need for a CT Scan, saving the patient needless exposure to radiation and saving the healthcare system millions of dollars.
Published on the Food & Drug Administration website, FDA News Release https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm596531.htm February 14, 2018
Media: Tara Rabin
Could Targeting Gut Bacteria Prevent Autoimmunity?
Researchers from Yale University in New Haven, CT discovered that bacteria in the small intestine can travel to other organs and induce an autoimmune response. By administering an antibiotic or vaccine, the scientists found that they could suppress the autoimmune reaction in mice, reversing the effect of this bacteria on autoimmunity.
A few of the illnesses that may benefit most from this research are Type 1 Diabetes,Systemic Lupus, Autoimmune Liver Disease and other autoimmune diseases linked to this bacteria.
The new study complements prior studies that uncovered a link between gut bacteria and autoimmune diseases.One of those studies published in the journal Applied and Environmental Microbiology, showed that species of Lactobacillus in the gut of a lupus mouse were linked to a reduction of symptoms.
The Study: Translocation of a Gut Pathobiont Drives Autoimmunity in Mice and Humans Bacterial involvement in Autoimmunity Published by Science, 3/9/2018
Vol 359, Issue 6380, pp 1156-1161
A synopsis of the new study and links to the original studies can be found in Medical News Today https://www.medicalnewstoday.com/articles/321157.phpBy David Railton, published 3/9/2018
Postural Tachycardia in Hypermobile Ehlers-Danlos Syndrome: A distinct Subtype?
A study was done to determine is patients with POTS and EDS differ from patients with POTS from other etiologies. The comparison of autonomic testing results along with healthcare utilization in POTS patients with and without EDS was examined.
Results: The study concluded that while autonomic testing results did not differ dramatically between groups, the patients with POTS and EDS took more medications and had greater markers of healthcare utilization as well as chronic pain playing a prominent role.
Study: NCBI PubMed: PMID: 28986003, DOI:10.1016/j.autneu 2017.10.001 https://www.ncbi.nlm.nih.gov/pubmed/28986003
Thanks to Lisa Carr for the contributions of research material that were gathered for this article.
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During the summer of 2017, DINET conducted an informal survey that asked questions about the age of onset of dysautonomia symptoms, diagnosis and the experiences our female members had during the diagnostic process. The survey results contained in the pdf below show the raw numbers collected from respondents answers, as well as selected written answers from respondents. Many women shared their stories within the survey answers and the similarity of experience was striking.
This was not a scientific study and the data presented represents a sampling of information and opinion and should not be interpreted as research.
Special thanks to Trudi Davidoff for writing the survey and compiling the results.
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Every Sunday on DINET's Facebook page, our Social Media Coordinator, Lauren Mlack asks DINET followers questions about living with dysautonomia and chronic illness. Here are highlights from some of the surveys. Find out how your answers compare to the rest of the community.
"Do compression stockings/tights help your symptoms?"
56% yes, 44% no
"How did you find out about DINET?"
11% friends and family, 89% through research online
“How many of you are dysautonomia fighters and how many are dysautonomia caretakers?”
84% fighters, 16% caretakers
"While trying to find a diagnosis, were you told at some point by a medical professional that it was just anxiety causing your symptoms?"
89% yes, 11% no
"For those of you who have POTS, do you also have syncope (passing out) or near syncope (the feeling like you are about to pass out but usually don't)?"
71% report near syncope to 29% experiencing syncope
"Do you experience brain fog?"
98% answered “yes”, 2% no
"Do you have temperature sensitivity? (Such as feeling worse or better when it is cold versus warm outside"
95% said “yes, my symptoms change” 5% no
Does a cold/flu hit you harder or last longer while having a chronic illness?"
94% said “yes!”
To participate in these surveys, check out DINET's Facebook page every Sunday.
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