Hot off the presses! A large groundbreaking research study on the prevalence of dysautonomia (malfunction of the autonomic nervous system) in Sjogren's patients has just been published:
Autonomic symptoms are common and are associated with overall symptom burden and disease activity in primary Sjogren's syndrome
In summary, this was a large multi-centre study that included over 300 Sjogren's Syndrome patients and 300 controls. They determined that a whopping 52% of Sjogren's patients had dysautonomia!
This is good news for everyone in the dysautonomia, even if your dysautonomia is not caused by Sjogren's Syndrome. Here's a little math to explain why...
-there are 7 billion people on planet Earth...
-Sjogren's is estimated to impact about .5% of the global population...
-that equates to about 35 million people on the planet who have Sjogren's...
-if half of them have dysautonomia, that is 17.5 MILLION people who have dysautonomia associated with Sjogren's
The more people who have dysautonomia, the easier it will be to convince policy makers to fund dysautonomia research and to convince drug manufacturers to develop new drugs to combat dysautonomia.
Since I was diagnosed with Sjogren's as the cause of my POTS and autonomic neuropathy, I have been discussing my situation with many other POTS and Sjogren's patients, and through my own anecdotal research, I had decided that many POTS patients probably had undiagnosed Sjogren's, and many Sjogren's patients probably had undiagnosed dysautonomia. I had asked in the POTS patient forums "who has Sjogren's?" and heard from over 30 people in a very short time. I also heard form many POTS patients whose doctors suspect some autoimmune problem as the root of their POTS symptoms, but they cannot pinpoint exactly what autoimmune issue is going on.
Then I had asked in the Sjogren's patient forums, "who has POTS?" I got a lot of "what the heck is POTS?" responses and a few people saying they had been diagnosed with POTS and Sjogren's, but that their doctors didn't seem to think they two diagnoses were connected. This drives me nuts, because in most patients who have been diagnosed with POTS and any autoimmune disease, it probably is the autoimmune disease that is causing the POTS symptoms. How could their doctors not realize that?
Then I rephrased my question to the Sjogren's community, since most of them are seen by rheumatologists, and I assume rheumatologists are even less likely to know about POTS than a cardiologist or neurologist (which are the type of doctors most POTS patients use). Instead of using the word POTS, I asked the Sjogren's patient groups "does anyone on here get a really fast heart beat and lightheaded every time they stand up?" I got a huge response. Even though this was very unscientific, it proved to me that there was a link that deserved some further attention from real researchers.
Drawing the link between dysautonomia/POTS and Sjogren's is not just about adding an extra diagnosis to your chart. Understanding more about what is causing your symptoms is really important. It can give you peace of mind to understand what is causing your symptoms. More importantly, it can lead to a more tailored approach to your medical treatment, which should lead to a better quality of life for you.
Autonomic symptoms are common and are associated with overall symptom burden and disease activity in primary Sjogren's syndrome
This is good news for everyone in the dysautonomia, even if your dysautonomia is not caused by Sjogren's Syndrome. Here's a little math to explain why...
-there are 7 billion people on planet Earth...
-Sjogren's is estimated to impact about .5% of the global population...
-that equates to about 35 million people on the planet who have Sjogren's...
-if half of them have dysautonomia, that is 17.5 MILLION people who have dysautonomia associated with Sjogren's
The more people who have dysautonomia, the easier it will be to convince policy makers to fund dysautonomia research and to convince drug manufacturers to develop new drugs to combat dysautonomia.
Since I was diagnosed with Sjogren's as the cause of my POTS and autonomic neuropathy, I have been discussing my situation with many other POTS and Sjogren's patients, and through my own anecdotal research, I had decided that many POTS patients probably had undiagnosed Sjogren's, and many Sjogren's patients probably had undiagnosed dysautonomia. I had asked in the POTS patient forums "who has Sjogren's?" and heard from over 30 people in a very short time. I also heard form many POTS patients whose doctors suspect some autoimmune problem as the root of their POTS symptoms, but they cannot pinpoint exactly what autoimmune issue is going on.
Then I had asked in the Sjogren's patient forums, "who has POTS?" I got a lot of "what the heck is POTS?" responses and a few people saying they had been diagnosed with POTS and Sjogren's, but that their doctors didn't seem to think they two diagnoses were connected. This drives me nuts, because in most patients who have been diagnosed with POTS and any autoimmune disease, it probably is the autoimmune disease that is causing the POTS symptoms. How could their doctors not realize that?
Then I rephrased my question to the Sjogren's community, since most of them are seen by rheumatologists, and I assume rheumatologists are even less likely to know about POTS than a cardiologist or neurologist (which are the type of doctors most POTS patients use). Instead of using the word POTS, I asked the Sjogren's patient groups "does anyone on here get a really fast heart beat and lightheaded every time they stand up?" I got a huge response. Even though this was very unscientific, it proved to me that there was a link that deserved some further attention from real researchers.
Drawing the link between dysautonomia/POTS and Sjogren's is not just about adding an extra diagnosis to your chart. Understanding more about what is causing your symptoms is really important. It can give you peace of mind to understand what is causing your symptoms. More importantly, it can lead to a more tailored approach to your medical treatment, which should lead to a better quality of life for you.
My POTS was diagnosed in 2009 and Sjogrens in 2010. My list of secondary issues is endless. I went from happy and healthy in 2008 to now severely disabled and home bound. Doctors do not know what to do for me. I'm only 39 and feel like life is over.
ReplyDeleteIf you would like to join an online support group for patients who have been diagnosed with Sjogren's and POTS, you can contact me at potsgrrl@gmail.com. We share information with each other on treatments, which doctors are good for patients like us, lifestyle modifications that can help, etc.
DeletePOTSgrrl, I was just diagnosed with POTS a month ago, first suspected it only several months earlier, as the change in heart rate upon standing and fatigue, dizziness were my first symptoms. But now my eyes are really bothering me. Very dry, as is my mouth at night, but that doesn't bother me as much. My eyes bother me during the day. I guess this could be Sjogrens - maybe something else? I feel very dehydrated in general, with dry skin in many places, even though I drink and salt a lot. Did Sjogren's really dehydrate you?
ReplyDeleteI completely understand. I, too have Sjogrens and a list of systemic problems as a result. It is a very isolating disease and some of us suffer incredible loss of our pre-disease life. You are not alone and there are people who understand. I pray for the health care system to get up to speed with the science in reducing the suffering of this disease.
ReplyDelete