Jump to content

Information Resources

Ongoing Study Information
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 long time collaborative partners in rare autonomic disorders.  Contact information and more information about the studies can be found in this article. 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 ear lobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm.   Participants must be females between the ages of 18 - 45 with POTS.  To learn more about this study or to participate, visit https://www.rarediseasesnetwork.org/cms/autonomic/6111
Recruiting:   Clinical Autonomic Disorders:  A Training Protocol is a study to learn more about dysautonomias for the specific purpose of developing training protocols to help new physicians understand the illness and to better diagnose patients.  To participate in the study or read more about it, visit our studies page or go directly to the clinical trials site.
Recruiting:  The Big POTS Survey  is still going on.  Vanderbilt University and Dysautonomia International sponsored survey.  The study's lead investigator is Dr. Satish Raj, MD MSCI, Adjunct Professor of Medicine at Vanderbilt University's Autonomic Dysfunction Center.  Dr. Raj 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.  Go directly to the survey
News and Information
Deadly risks of taking kratom  This seemingly innocent natural product can be very harmful to your health.
IMPORTANT INFORMATION:  POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center.
"It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS."  https://www.ncbi.nlm.nih.gov/pubmed/28986003
POTS Related Information
Estimation of Sleep Disorders using Wrist Actigraphy in Patients with POTS  https://ww2.mc.vanderbilt.edu/adc/43572   
Investigators conducted a questionnaire study to assess sleep disturbances and quality of life in patients with POTS and healthy subjects.  Patients with POTS and healthy volunteers were given several surveys to assess their sleep (Epworth Sleepiness Index & Medical Outcomes Study [MOS] Sleep Survey), level of fatigue (a visual analogue scale) and health related quality of life (RAND36 and EQ5D).
Patients with POTS reported more sleep problems, daytime sleepiness and fatigue, and worse health related quality of life than the healthy volunteers.
Patients with POTS had a markedly diminished quality of life in both physical health and mental/social health domains compared to the healthy volunteers.  The scores were comparable to previously published scores for patients with kidney failure requiring hemodialysis.  The Vanderbilt data were similar to a prior publication from the Mayo Clinic {PMID: 12059122} that also found diminished quality of life in patients with POTS.
There was a strong correlation between sleep problems and physical and mental health related quality of life. In fact, 60% of the variability in score for each of the physical health domain and the mental health domains could be accounted for by the Sleep Problems Index (a summary score from the MOS Sleep Survey).
Orthostatic Intolerance and Tachycardia Associated with Norepinephrine-Transporter (NET) Deficiency  https://www.ncbi.nlm.nih.gov/pubmed/10684912

Lack of function of the norepinephrine-transporter can cause POTS*
Some years ago, a patient with POTS was found to be heterozygous (had one copy of the mutant allele) for a mutation in the norepinephrine transporter gene that caused a single amino acid (protein building block) change in the protein (A457P). The mutation was “dominant negative” and resulted in an almost complete “loss of function” of the norepinephrine transporter compared to the normal gene. Since the transporter is involved in clearance of norepinephrine from the sympathetic nerve synapse (area between nerve terminals), this mutation likely led to an increase in norepinephrine in the synapse, and in excessive sympathetic activation. This likely resulted in the excessive heart rate seen in this patient, which was worse on standing (when there would be more sympathetic nervous system activation). Other members of this patient’s family that had this genetic mutation also had a greater increase in heart rate with standing and elevated plasma norepinephrine compared to those without this genetic mutation. This demonstrates that orthostatic intolerance and tachycardia are associated with norepinephrine transporter deficiency.
Do Other Non-Related Patients Have This Mutation?
For several years, we looked for this mutation in other POTS patients.  We have not found any other non-related patients to have this same loss of function mutation.
Decreased NET Protein Expression in Some POTS Patients
We had just about lost hope in NET deficiency as an important contributor to POTS in many patients. More recently, colleagues from Melbourne Australia published a very nice paper in which they performed forearm vein biopsy in a handful of POTS patients and healthy volunteers.  They then assessed the amount of NET protein in the vein tissue.  They found that several patients, but not all, had low levels of NET protein expression compared to the healthy volunteers,  These data suggest that even though most POTS patients do not have a genetic mutation causing dysfunctional NET protein, it may be more common to have decreased protein expression.  Further work from their group has suggested that the relevant DNA may not “uncoil” properly in some POTS patients.  This would be required to make it available for transcription to RNA to then make the protein.  In another very elegant paper from the Czech Republic, the authors performed MIBG heart scans in 20 POTS patients.  MIBG is a radiotracer that is taken up by sympathetic nerves via NET.  They found that 20% of the patients had markedly diminished heart uptake of MIBG.  They concluded that these hearts were denervated.  An alternative explanation could be that these patients had decreased NET expression (as shown in the Melbourne studies) and could not take up the MIBG tracer.
*Summary information above from the Vanderbilt Autonomic Dysfunction Center
Return to Newsletter Table of Contents - December 2017

Below are questions sent in by DINET members and answered by our team of Medical Advisors.  If you have a question for DINET's advisors, please send to webmaster@dinet.org 
Q:  My neuro ordered IVIG that was denied and then denied again on appeal, even tho I had what most consider very good insurance.  I read on your site that over 50% respond very well, but “more studies are needed”.  My question is when will this happen?  It seems after five years there would be some progress. Thanks, Lisa
A:  There is research money available for this. Several universities are applying for grant so may be 1-2 years
Amer Suleman, MD, FSCAI, FHRS
The Heartbeat Clinic
Adjunct Professor, UT Dallas
Q:  I have hyperadrenergic POTS with no known underlying cause at this time. I have recurrent attacks which usually occur after 1-2 hours of sleep at night with a 169-170 HR and sweating and feeling terrible. The attacks have recently been happening during the day as well. Is there a medicine that helps calm the SNS specifically? I am on Propanolol right now but it isn’t seeming to help as much as I would like.
I feel as though these attacks are more of adrenaline surges and they are by far my worst symptom. Any advice would be greatly appreciated. Thanks, Jessica
A:  Hyperadrenergic POTS is a poorly understood medical problem that can cause debilitating symptoms.  It most often begin in the late teens or early adulthood.  It may be due to a wide variety of conditions that lead to symptoms of postural intolerance (feeling uncomfortable in a sitting or standing position) in association with a rapid heart rate and elevated adrenaline levels with standing.  Depending on your age and the presence of other factors in your medical history the exact cause of the problem may be determined, but often no clear correctable cause can be identified.  
Most commonly, symptoms are limited to standing or sitting, so waking up in the middle of the night with such a rapid heartbeat would be unusual in this condition. That history raises the possibility of a cardiac arrhythmia, and this should be explored with extended cardiac monitoring or perhaps electrophysiologic testing.  Assuming that it is not an arrhythmia, episodic tachycardia, especially with hypertension, raises the possibility of an adrenaline-secreting (most often benign) tumor know as a pheochromocytoma.  Obtaining 24-hour urine measurements of adrenaline and its breakdown products can help rule this out.  
If neither of these other conditions is present and you are dealing with hyperadrenergic POTS alone, then beta blockers like propranolol can help because they block the effect of adrenaline on the heart. However, propranolol has a relatively short duration of action, meaning that it wears off 6-8 hours after taking the pill. Often it has to be taken 3 or 4 times a day to provide adequate relief of symptoms. There are longer-acting beta blockers that might work better.  However, beta blockers often worsen the fatigue that comes with POTS.  Other medications that have been successfully used in the treatment of hyperadrenergic POTS symptoms include methyl dopa and clonidine, which work by reducing adrenaline production.  Other more standard treatments for POTS include water and salt loading, exercise, and other medications to expand blood volume or improve the body’s ability to compensate for an upright posture (mainly agents that constrict blood vessels like midodrine). You should speak with a physician who is experienced in treating POTS to gain additional insights into what treatments might improve your symptoms further.
Nicholas G. Tullo, MD, FACC, FHRS
New Jersey Center for Fainting
West Orange, NJ
Q:  I have been diagnosed with POTS/NCS and what has been described to me as general autonomic dysfunction.  I have been prescribed narcotic pain medications for a separate issue but I am concerned about the effect of narcotics on BP and heart rate or on dysautonomia overall.   Also, one of my worst symptoms is shortness of breath with movement (even walking causes a drop in oxygen levels), so my question is, in general are there known complications with narcotics for people with dysautonomia? And if so, are there precautions to take to lessen any negative side effects?  Thanks so much, Wendy
A:  Shortness of breath with exertion is common in POTS. This is usually due to the tachycardia. It is not usually associated with drops in oxygen saturation. If your oxygen saturation is dropping, especially without the tachycardia there is another problem - either a "hole in the heart" or a shunt in the lungs or some other lung disease.
The narcotic question is difficult to answer. Narcotics can clearly reduce gut motility. They should not drop the blood pressure as a class. Some narcotics can cause a lot of histamine release, and this could cause a drop in blood pressure.
Satish R Raj MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary, Vanderbilt University
Q:  Hi I am a POTS patient in the UK, unfortunately no access to IV saline here apart from what I can get outside of the NHS medical system as a doctor myself. It is immensely helpful but only for a short time and I wonder if 5% albumin would have a longer effect by boosting the intravascular volume for longer.
Is this or has this been used/considered/studied anywhere and have the effects been positive? Many thanks, Lanah Dawn Scotland
A:  We utilize IV saline on as-needed basis, but we do not use albumin infusions or other types of solution.  I don't believe there has been any research done on the use of albumin infusions in patients with autonomic disorders.
Svetlana Blitshteyn, MD
Director and Founder of Dysautonomia Clinic
Clinical Assistant Professor of Neurology
University at Buffalo School of Medicine and Biomedical Science
Q:   What are treatment options for GI problems related to POTS?  Does autonomic dysfunction effect the nerve control in the bowels, and if so, how can that be treated to improve digestion, motility, and function?    Thank you!  Karen Eldersburg, MD USA
A:  GI symptoms are very common in patients with POTS and may include upper GI: nausea, abdominal pain, bloating and reflux, or lower GI: diarrhea, constipation or both.  Both upper and lower GI tracts are innervated by the autonomic nervous system and have high concentration of serotonin.  GI motility disorders, such as gastroparesis, rapid gastric emptying or intestinal hypo- or hyper-motility disorders can occur in patients with autonomic disorders.  There are medications that can improve gastric or intestinal motility and laxatives for those with constipation.  Dietary changes can also be very helpful in some of our patients with significant GI complaints.  In order to come up with an individualized nutrition plan, we have been offering nutrition consulting for patients with POTS.  If you would like to have a nutrition consult, please contact our clinic 716-531-4598.
Svetlana Blitshteyn, MD
Director and Founder of Dysautonomia Clinic
Clinical Assistant Professor of Neurology
University at Buffalo School of Medicine and Biomedical Science
Return to Newsletter Table of Contents - December 2017

Kat is a thirty-three year old mother, teacher’s aide and student living in Melbourne, Australia. She has always been a strong, active and independent woman.  Kat once walked eight kilometers (4.9 miles) each evening, was very active in her son’s school, and worked as a teacher’s aide until POTS altered her life in an instant.
When she first experienced symptoms, Kat contacted her general practitioner. Despite his best efforts, he was unable to properly diagnose her after ruling out migraines, chronic sinusitis and even a spread tooth infection. At thirty-two, her symptoms progressed to the point where she failed to remember her son’s birthday party and felt generally unwell. She visited the hospital for the first time in ten years. The attending physicians ran a myriad of tests and ultimately dismissed her symptoms as anxiety—one even went so far as to comment that she was wasting a hospital bed that could be useful for a truly sick person. She spent over a week in the hospital, where many of the health professionals continued to treat her condescendingly. She was only diagnosed with POTS because one night nurse noticed that her blood pressure dropped upon standing. This discovery led her to take notice of Kat’s cold, blue feet and her tachycardia. Kat was diagnosed with POTS and sent home with some medication.
While Kat feels that the medication does help, her life has been dramatically altered by POTS. She can no longer care for her son alone,  and has had to significantly cut back on her working hours.  Occasionally Kat has to use a walker or wheelchair to run errands and is not able to drive in the afternoons when her symptoms peak. These struggles have made her feel alone, and not able to trust her own body.  Kat feels very dependent, too dependent on her loved ones. Most significantly, she has guilt for not being the independent woman she used to be, with the ability to care for her son on her own and remain active in her community.
In interviewing Kat, I could empathize with the very sudden and devastating physical limitations POTS has brought to her life. Yet, I could feel her independent, even optimistic spirit shine through her words. Since POTS often confines her to home, she is getting her Bachelors of Primary Education online to maintain engagement on her tough days. Though she feels guilty about the added responsibility POTS has placed on her loved ones, she also talks about how her relationships with them have grown in deep, meaningful ways. She reminds herself to have faith in and patience with one of the most important people in her life—Kat. She realizes how far she has come since her diagnosis, as well as understanding that POTS can be a terrifying, unknown disease. She discusses that she is learning it is okay to be scared.
Kat is an inspiration for those of us (which I venture to say is many of us) who feel that we are to blame for our Dysautonomia. We feel guilty for losing our former selves, increasing “burden” on our loved ones and not living up to society’s standards of being productive citizens. Most days we want to return to our old selves, but Kat—through her own practice of self-love—reminds us to appreciate where we are today. Her insight also teaches us that we will not get self-love right every day, and it is okay to feel angry and scared through the daily battles we face. Most importantly, she talks about how many people cannot see our struggles - sometimes not even health care professionals. In a world where we may be dismissed as hypochondriacs, or are told our symptoms arise from “just anxiety,” we are quick to judge and question our own experiences. Kat reminds us “not to let someone else tell you how you feel inside.”  A lesson from which we can all draw strength.
Return to Newsletter Table of Contents - December 2017

6am:  Fumble around for my alarm clock while silently cursing the person who invented mornings. Peel myself out of bed and start my morning ablutions.
6:45am:  Get out of the shower and realize that I need to start putting my compression stockings on immediately. Optimistically try pulling my stocking over my still slightly damp left leg. Nope, never going to work.
6:55am: Blow-dry my legs. Wonder if life has any meaning.
7am:  Try not to panic about how late I am. Scrunch up the left stocking and start trying to slide it over my foot. Repeatedly lose my grip. Wonder if anyone has ever crushed their foot in a compression sock.
7:10am:  Sit on the floor for better leverage. Pull hard until the sock slides over my ankle. Slowly un-scrunch the sock while pulling it up over my leg.
7:20am:  See that the thigh-high sock barely reaches my knee. Start pulling the sock up from the bottom as per the manufacturer’s instructions. Succeed in pulling the sock up 5cm and then watch it shrink back to the ankle. Contemplate going back to bed.
7:25am:  Lie on my back with my leg in the air as recommended in several  instructional videos. Pinch at the fabric around my ankles in an unsuccessful effort to gain purchase.
7:32am:  Give up. Grab the top of the stocking with my aching hands and yank as hard as I can. Pump my fist in the air when the sock lands somewhere around mid-thigh. Victory!
7:33am:  Remember that I also have right leg. Wonder if life has any meaning.
Medical grade compression hose can be an important tool in dealing with orthostatic intolerances.  On the flip side, medical grade compression socks are, putting it mildly,  not exactly the easiest garments. They can be difficult to put on and take off, uncomfortable to wear, and expensive. Fortunately for those who benefit from the use of compression hose, there are ways to make that a bit easier.
1.      Talk to your doctor. If your doctor recommends compression, make sure you understand what you should be buying and how to wear the socks once you have them. If you are having trouble with your socks or are simply not seeing a benefit, bring that up. As with each aspect of managing a chronic condition, communicating with your health care team is vital.
2.      Make sure you have the right fit. Whether you’re buying compression socks for the first time or have been a long-time wearer, it’s important to ensure that they are properly fitted. If the socks are a poor fit, they might not function as intended. (Pal, 2011) Socks that are always falling down, bunching up, or digging into your skin may not be fitted correctly. (legsmart, 2012) You may prefer to have an in-person fitting for your first pair of socks or after a size change. (Linden, 2015) If you are ordering online and are unsure of the sizing, reach out to customer service.
3.      Experiment with different methods of putting on your socks to deal with the inevitable challenge. Proper fit may help as socks that are too small or have too much compression will be harder to put on. There are tools on the market that are designed to make that process easier. Depending on your individual circumstances, there may be suitable alternatives that are easier for you to use (e.g. compression wraps). You may find other approaches that work for you. Do bear in mind that sometimes putting on socks can be physically taxing and be mindful of safety.
4.      Consider different brands/styles/dealers. You may find that certain brands are more comfortable for you or offer the styles that you prefer. There are also many more colors, patterns, and textures available now than in the past. Once you know what socks work best for you, you may also find that you can get better prices or selection from different dealers. If you are able to shop around, that can help you save money.
5.      Keep your receipts if you are keeping track of non-reimbursed medical expenses for tax purposes.  If they are prescribed, they are deductible. 
The above list is certainly not meant to be either exhaustive or prescriptive. There are undoubtedly some strategies I’ve mentioned that won’t work in your particular situation and others, that I didn’t discuss that could be beneficial. Do what is best for you.
Remember, too, if you’re struggling with this part of your treatment plan, there is sure to be someone else out there who is just as confused or frustrated (probably me). Be open with your treatment team and check with them before taking my advice. The people on your treatment team, in addition to having specific knowledge of your circumstances, have years of experience and education. I’m just a stranger with a keyboard who has a hard time putting on her compression socks.
legsmart. (2012, January 17). 5 Signs Your Compression Stockings Are a Bad Fit. Retrieved from legsmart Resource Center: https://www.legsmart.com/blogs/resources/7033462-5-signs-your-compression-stockings-are-a-bad-fit
Linden, B. V. (2015, January 11). Compression Stocking Tip #2: Where to Buy Compression Stockings. Retrieved from Lymphedema Diary: https://lymphedemadiary.com/2015/01/11/compression-stocking-tip-2-where-to-buy-compression-stockings/#more-438
Pal, S. (2011, March). Compression stockings: One size definitely does not fit all. Retrieved from Lower Extremity Review: http://lermagazine.com/special-section/diabetic-foot-care/compression-stockings-one-size-definitely-does-not-fit-all
Return to Newsletter Table of Contents - December 2017

How to prepare for an ER trip or a visit to a new medical practice.
Going to the ER or to a new doctor’s office can be a stressful experience.  The obvious reason is that we are sick. Sick enough to need an ER or sick enough to need another consult.  But the other more difficult reason for the stress, is the reaction we get from the medical professionals we go to for help..
The best way to help your stress level and theirs is to be prepared.  Let’s face it, it can’t be easy for the ER team, the doctors and nurses to have a patient in front of them talking about illness and treatments that they know little, if anything, about.  So since they can’t prepare, it falls to you.
Here are some suggestions to help you get ready in advance.
Long before you are in need of new services, create a medical notebook.  Download one or two medical articles related to your particular form of dysautonomia, a list of ALL of your medications (even the things that don’t necessarily come by prescription, like the vitamins you take and the lemon-mint tea that helps you digest), a listing of your medical history (past and current) and at least one doctor at the center of your treatment that can fill in any blanks.  It is very helpful if you can arrange an understanding with your “go-to” doctor in advance so they are willing to jump in when needed. A few cheat sheets are included with this to help you get started. Be sure to have water and a snack with you for the wait and don’t forget to bring your current meds with you.   As we all know, dysautonomia symptoms do not always follow the “normal” course of accepted action and reaction.  For example,  in the case of certain types of dysautonomia, the standard test for dehydration may return normal levels and volume, yet if the medical team understands what to look for, they might see that the person has dangerously low levels of sodium.  This is just one example, there are many more examples of vital information that can be missed because this illness does not follow the standard, expected reactions of other illnesses.  Be sure to include the HR range and BP range that is “normal” for you.   And this brings us to the next extremely important preparation to make before you go to the ER or to a new medical team - advocacy.  You have to be ready as the patient to advocate for yourself or if you feel too sick to take on what could be an uphill battle, then prepare to bring someone with you who you trust and who understands your illness well. Understand before you even get there, that if the ER staff or new doctor and nurse you are there to consult with, are unwilling to read the articles you’ve brought with you, or to take their time going through and asking questions about your medical history, then this is not the place for you.  If a new team has an uncooperative attitude from the beginning, if they are unwilling to listen and understand the information you have about this complex and unusual illness, then they are unable to treat you properly.   Patient Guide - medical trips.pdf

NOTE from DINET:  This article is page 1 of a packet focused on children & teens living with POTS.  This information is available on our site and also as pdfs that can easily be emailed, printed, or printed & copied.  This information can be used as a handout for teachers, coaches, family members and anyone else who is in regular contact with your child yet doesn't understand what they or you are going through living with POTS.  We sincerely hope it helps.
If you know a child or teen who has been diagnosed with something called POTS, you may be scratching your head.  You're not alone.  POTS stands for Postural Orthostatic Tachycardia Syndrome. Although POTS was identified in the 90's, many physicians are still unfamiliar with the illness.  There is still an average wait time of 5 years and 11 months from the onset of symptoms to diagnosis and treatment. That is a very long time to wait for help for an illness that can be completely debilitating. 
No one knows what causes POTS but it frequently begins after the child has had a prolonged viral illness, like the flu or mono.  POTS is not contagious. 
POTS is the result of the dysfunction in the autonomic nervous system (dysautonomia).  Put simply, the autonomic nervous system helps to control many of the things our bodies do automatically - without thinking about them.  A person's heart rate, pupil dilation, blood pressure, sweating, salivating, etc. - all things that our bodies do without us giving it a second thought.  But when a person has POTS, some of these things stop operating correctly.  Although many teens outgrow symptoms as they age, it is a very debilitating illness while it lasts. 
Symptoms & Complaints
Some of the symptoms that you may notice or the child may complain about are:
Feeling lightheaded or like they are going to faint when they stand up. Tachycardia (fast heart rate) and palpitations within 10 minutes of standing. Weakness, extreme fatigue and headaches Nausea and stomach pain or discomfort Sweating inappropriately These are only a few of the symptoms a child may experience.  But these are the more common symptoms that are easily noticed and the most common complaints a child might have. 
So, now that you know what it is, how can you help if the child is in your care?
HYDRATE!  Remind them to drink!  POTS is greatly affected by the child’s level of hydration.  Water helps but the best aids are electrolyte based drinks. STAND AND WAIT!  Remind them to stand slowly and give their bodies a chance to adjust to being upright.  A child is  more at risk of being injured if they jump up and run before adjusting to any light-headedness they might be feeling. CARRY MINTS  Peppermint is a natural way to soothe nausea for some people. SALTY SNACKS  What kid will argue with you if you remind them to eat some chips or pretzels?  Salty foods as a snack throughout the day will help the child’s hydration as well as their sodium level. COOL TOWELS  If you notice the child is sweating severely or complains of feeling lightheaded or weak, a cool cloth can help revive and rejuvenate the child. Place the towel on the back of the child’s neck. A cool cloth placed where the head meets the neck can help to relieve feelings of weakness.     Don’t be afraid to ask questions.  The better you understand what the child is going through, the the more help you can be.
Call 911 immediately if the child loses consciousness, is unresponsive or exhibits any other symptom that causes concern.
For more information about POTS and other types of dysautonomia, visit www.dinet.org
Also, consider making a donation on behalf of the child or parents living with this illness to DINET.  We are a 501C3 non-profit, all volunteer organization dedicated to supporting patients and educating the medical community about all forms of dysautonomia.  Visit https://www.dinet.org/get-involved/donate/ for ways you can help. 
Teen POTS download.pdf

The Dreaded Question by Sarah Phelps
The Challenge of Working with Dysautonomia by Ellen Driscoll
Diagnosed at 59: I am an Outlier by Trudi Davidoff
Beat the Heat by Amy Keys
Meet the Member - Trudi's Story by Chelsea Goldstein
Creative Writing: Drowning in the Wake by Rachel Cox
DINET Community News: Welcoming new Board Members & Volunteers and saying Goodbye to a few old friends.

from Ellen Driscoll, President Dysautonomia Information Network - DINET
As people who live with, or have loved ones living with, Dysautonomia, we know it is frequently a roller coaster ride of a life.  We have good days and bad days and sometimes it is very tough to remember what a good day felt like when we are in the middle of a string of bad days.  We also tend to hear and read some of the most dismal and dark information about our illness and our road ahead.  But we have good stories, great stories too.  Stories from patients who are managing their illness and enjoying life after years of struggle.  Stories from caretakers who are seeing smiles more often and pain less and less, from their loved one who is finally adjusting to their meds.  And we have stories of remission….recovery.  Stories that we have largely been told don’t exist or rarely do.
Good news, news of recovery!
Two of our board members are managing their illness and have recovered enough to return to full time work.  While we are always thrilled to hear news of wellness, it is particularly sweet when it is one of our own.
Michael Blaney has served as a DINET Volunteer and Board Member since 2015.  Michael spent time contributing to the Forum as an Ambassador, as well as working as the designer for our newsletter.  For the past year, Michael has contributed to our Facebook page making updates and sharing information with all of you.  Now that Michael’s health has improved to a great degree, he is excitedly returning to school and planning a much more challenging schedule.  Michael has been an asset to the DINET Board of Directors in many ways and will be missed.  We all celebrate Michael’s recovery and wish him the best of luck in his educational and professional pursuits.
Michelle Sawicki founded DINET.  After developing POTS in 1999, she became frustrated by the lack of resources and information about this disorder.  Thankfully for all of us, she decided to do something about it.  Using her educational & professional background in Library and Information Sciences, she researched and cataloged reams of information about this illness.  She shared that information with the world, as the web site PotsPlace in 2002.  A year later, she merged and expanded that information into the Dysautonomia Information Network (DINET).  Establishing DINET as a non-profit organization as well as a website capable of connecting patients and caregivers worldwide.  Michelle served the organization as President from 2003 - 2011 and returned to serve as VP from 2015 to 2017. Michelle’s energy and commitment to this organization has helped thousands of people struggling to understand this illness.   Michelle’s busy work and life in Missouri has made serving on the board very difficult for her recently.  We greatly appreciate her willingness to stay on long enough to pass on her wisdom to the rest of us that will be moving into new leadership roles at DINET.
Another goodbye and thank you goes out to a valued member of DINET’s Forum Team, Corina Rietbroek-Methorst.  Corina has been a member of DINET since 2004 and became a Forum Moderator in 2013.  Corina lent her empathetic voice to her work as moderator. She answered questions, found resources for other members and generally guided users to have the best experience possible on our forum.  Corina leaves DINET to tend to family responsibilities.  She will be sorely missed by the DINET staff and especially by our forum users.  DINET wishes her all the best.
Changing Roles & New Members
Sarah Abraham has been serving on the DINET Board of Directors since 2015 and most recently served as Board Secretary.  Sarah has been a volunteer with DINET for many years and has worked in many different areas of the organization, giving many hours of tireless work in her role as Forum Moderator in particular.  Sarah has jumped into every project where help was needed and has gathered an enormous amount of experience and knowledge in doing so.  The DINET board is very happy to announce Sarah Abraham as the new Vice President.
In addition to these changes, we are beyond excited to welcome members to new roles within the organization.  Joining the Board of Directors as General Members are Chelsea Goldstein and Trudi Davidoff.  I’m sure Chelsea’s name is familiar to most of you.  She may have even interviewed you once upon a time.  Chelsea has contributed to the DINET newsletter as the writer of the Meet the Member column for many years.  Her insight, talents and dedication has helped us to know one another, near or far, in so many ways that would have been difficult without her and certainly wouldn’t have been as interesting.  
Trudi Davidoff is new to DINET but not to online knowledge based sites.  Trudi brings a wealth of talents for research and information gathering as well as a sincere desire to help and support others living with dysautonomia.  In addition to her board responsibilities, Trudi will be writing for the DINET newsletter.  In fact, this edition features the writings of both Chelsea and Trudi, including Chelsea’s interview with Trudi for her Meet the Member column.  
DINET is very lucky to welcome a new volunteer to one of the most vital roles within the organization.  The role of Volunteer Coordinator has been accepted by Lisa Burgess.  This role is critical for us, not just because we rely on recruiting volunteers to get the work done, but because our volunteers are the face of DINET.  When a person first finds our site, maybe after searching for answers for weeks or months, it is the work that the volunteers do that makes the first impression.  It gives that person their first sense about whether this “place” is going to be a safe home for them.  The Volunteer Coordinator is the essential role that marries that job with that particular volunteer.  It is the Coordinator who will let a person looking to volunteer feel that they are putting their effort into the right organization.  And it is the Coordinator who helps us keep our volunteers by keeping you informed, empowered and feeling valued.  Lisa joins us with a wealth of HR experience, an intelligent, creative mind and a personality that makes you feel you could talk to her all day.  
Please join me in welcoming a new group of volunteers - people generous enough to offer their talents, energy and skills to DINET.,  We welcome - Abi Shrapnell, Amy Keys, Sarah Phelps, Mona Hussein and Reanna Bibb all joining the writer’s group.  Dalia Shafi joins the forum team and Lauren Mlack will be coordinating our social media posts as well as creating graphics for us as needed.  
Finally, I am honored to accept the position as President of DINET.  I am truly excited to work with such a fantastic team of volunteers and board members.  I have been a volunteer myself for a number of years and when first asked to consider the role, I declined.   Not because I didn’t want it, but I felt that it was important to work my way through the organization and to really understand the challenges, as well as the assets, before taking on a leadership role.  Since then, I have served as the Managing Editor for the newsletter, Webmaster to the site, a General Board Member and finally Treasurer.  These roles prepared me well for the work that needs to be done.  This has never been a one or two person show.  DINET requires all of us to do our best, to remember why we are here and involved.  We may be the one, solitary thing that stands between a person feeling validated in their illness and feeling misunderstood and forgotten.  I promise to do my best to serve the dysautonomia community and the Dysautonomia Information Network.  
I hope you will feel energized and newly excited to be a part of DINET.  We have a solid team working together with new ideas and new ways to educate the medical community and new ways to continue to be a place of support and empowerment. Please let us know what you are thinking and the ways you feel DINET can better serve our community. 
Best of health for all of us,
Ellen Driscoll

  • Create New...