dysautonomia | The Dysautonomia Dispatch

Some people with dysautonomia work with service dogs to assist them with specific tasks. This guest blog post will discuss service dog laws and requirements in the US. Other countries may have different laws that apply to service animals.

As someone with multiple chronic illnesses and service dogs, here are some tips that may help you decide if a service dog is right for you.

Firstly, it’s essential to do your research.

Before you get a service dog, there are plenty of facts to consider. The first step in considering a service dog in the United States is to discuss with your doctor whether your condition is disabling enough to qualify as the legal definition set forth by the Americans with Disabilities Act (ADA).

If your doctor thinks you meet that definition, your next step should be to research all the laws regarding service dogs. Here are a few to start with:

Americans with Disabilities Act (ADA)
Housing and Urban Development Laws (HUD)
Air Carrier Access Act (ACAA)
Any state and local laws or ordinances about service dogs

Only after you have read and understood these laws can you honestly decide if a service dog is the right aid for you.

While no legally recognized certifications, registries, or IDs are required for assistance dogs, many scam websites allege these are necessary and just-so-happen to sell them. These practices can be deeply harmful to service dog teams (which include the service dog and their handler) and should be avoided.

It’s important to understand that an Emotional Support Animal (ESA) or Therapy Animal does not qualify as a Service Animal. They have separate purposes, so you are encouraged to research the differences while reviewing applicable laws.

Next, you must determine what tasks a service dog can do for you. Think about what areas in life with which you struggle because of your disability and try to match them to a “task” a dog can do for you. The tasks a service dog can perform must be directly linked to your specific legal disability, individualized for your needs, and for which the service dog must be trained to accomplish. An example could be if you have a mobility problem that makes it difficult to bend down, a service dog can be tasked to pick it up for you. Or maybe you need help getting up due to a balance issue, in this case, the Service Dog can provide a counterbalance for you to do so safely.

Anything is Pawsible has a good list of tasks with a thorough list of categories that are easy to navigate so you can easily determine which tasks a service dog can do for you. Keep in mind that just because a dog provides comfort/protection, tricks, or if the dog does something naturally, this does not count as a task.

It’s essential to find the proper service dog for the job. First and foremost, you should remember the phrase “Need Before Breed.” Do not shop for a specific breed but for a dog that can perform the job.

Age and temperament are also crucial – it’s best to find a dog young enough to train and that they have been temperament tested. Additionally, the dog should be healthy and free of all health and genetic concerns. It should not be considered if the dog could benefit from a service dog of its own.

Service dogs expected to perform mobility tasks should meet or exceed the ethical height and weight requirements when fully grown. Further, it is best to have the dog cleared by an orthopedic certified veterinarian to ensure their growth plates have closed before expecting one to perform any form of heavy mobility task training.

Be aware that some alerts cannot be trained, such as medical alerts for seizures and heart rate alerts. If the dog has a natural alert to your condition, you will need to hone that alert and train the dog to alert you correctly and consistently for it to become a task (a natural alert alone is not considered a task).

Once you have found a prospective service dog, you must invest significant time and money to properly task-train the dog, whether you do so yourself, find a program, or use a private trainer. Training is a lengthy process and can take on average, 18 months to two years, depending on the task(s) involved. Assistance Dog International is a good resource for identifying accredited programs and trainers.

Not every dog will be able to pass all necessary training, so be ready for the potential for washouts (failed task training) and have a backup plan in place.

For a fully trained service dog, it may take $20,000 – $40,000 whether program or owner-trained. On top of the purchase and training fees, you also need to consider the cost of veterinary care, food, grooming, and gear or equipment.

Once your service dog is potty trained, under your control at all times, and able to perform at least one task with 100% accuracy, you have a legal and proper service dog!

An additional consideration is the additional time and preparation it takes to travel with your service dog. You are not only getting yourself prepared, but you will also have to prepare your dog for whatever outing they are attending. You will always need to carry supplies to protect them from the elements, such as dog boots to protect the dog’s paws from the hot ground, cooling coats to prevent overheating, rain gear, or sweaters. You will also need basic supplies, such as food, water, treats, poop bags, backup leashes, and vests/harnesses.

Further, service dogs attract a lot of attention, and you are stopped constantly by people with questions. It is common to inform people your dog is working and cannot be distracted or pet. Be prepared for invasive, personal questions about why you need a service dog. You can use this to educate the public about the purpose of a service dog, the difference between a service dog and an emotional support or therapy dog, or even about your chronic illnesses if you feel comfortable doing so. If these social situations ever become overwhelming and stressful, you have every right to excuse yourself from the situation for the safety of both you and your dog.

In the United States, service dogs have access rights to go everywhere someone who walks on the streets can, except for some churches (on a case-by-case basis) and sterile environments. Certain businesses may try to deny you access. You can spend the time educating them on the ADA Act and the access rights of a service dog, or you may choose to take your business elsewhere – the choice is yours.

Service dogs in Training DO NOT have the access rights that a fully trained dog does. The laws vary by state for service dogs in Training, so look up the state laws. As someone with multiple chronic illnesses, my service dogs have helped me accept and navigate my life as a disabled person. They protected me from injury, and I learned to appreciate and love my life. They also taught me to be patient with myself and others, listen to my body, and take care of myself. I hope this article can help give you the resources and information to help you have the same.

Guest blogger Lyam Lacock is a resilient Dysautonomia Warrior with expertise in service dog training and handling, as well as navigating the world with chronic illnesses.

Many patients have sent Dysautonomia International questions about the association between antiphospholipid syndrome and POTS, after an article appeared in the medical journal Lupus on this topic on February 25, 2014. Dysautonomia International asked the first author of this article, Dr. Jill Schofield, to address some of the questions raised by the patient community in the following blog post. Please note that this is not meant to replace advice given by your own physician.

What Dysautonomia Patients Should Know About Antiphospholipid Syndrome
by Jill R. Schofield, MD

We have recently published the first clinical association of postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS) and orthostatic hypotension (OH) with antiphospholipid syndrome (APS). APS is also known as Hughes syndrome. I was delighted to co-author this paper with Professor Graham Hughes, who first described antiphospholipid syndrome in 1983, Professor Yehuda Shoenfeld, considered by many to be the “father of autoimmunity” and Dr. Svetlana Blitshteyn, noted autonomic expert and member of the Dysautonomia International Medical Advisory Board. You can view the abstract of the article here: Postural tachycardia syndrome (POTS) and other autonomic disorders in antiphospholipid (Hughes) syndrome (APS). The journal requires a paid subscription to view the full article, but your physician should be able to access it.

What is APS?
APS is a complex autoimmune disorder that is associated with several different antiphospholipid antibodies. These antibodies may be directed against clotting factors, platelets, and/or the cells that line blood vessel walls and they cause the blood to be too sticky. This results in an increased risk of blood clots in:

1) Arteries–causing most commonly stroke or heart attack.
2) Veins–causing deep vein thrombosis (DVT) of the legs and/or pulmonary embolus (PE) of the lungs.
3) Placenta–causing recurrent miscarriage, stillbirth or low birth weight babies.

In addition to an increased risk for blood clots, a number of other manifestations may occur in APS due to “sludging” of the blood. The list of these non-clotting manifestations is long and they are less well known to most physicians. Some of these manifestations include migraine (which may be severe and refractory to usual treatments), memory loss, seizures and stress fractures. We have now demonstrated that POTS, NCS and OH may also occur as non-clotting manifestations of APS.

How is APS diagnosed?
The Sapporo criteria for the diagnosis of definite APS requires:

1. Clinical criteria: Thrombosis (blood clot) or very specific pregnancy complications (such as three or more miscarriages).

2. Laboratory criteria: Medium to high titer antiphospholipid antibodies on more than one occasion at least 12 weeks apart.

These criteria were designed for rigorous clinical research studies, not for diagnosis. Unfortunately, most practicing physicians believe they were designed for diagnosis and this has resulted in patients with low titer antibodies and/or non-clotting manifestations not being diagnosed with APS, when they do have the syndrome. My hope is that we can change this perception, because I believe that with earlier diagnosis, we can prevent the thrombotic events!

For our study, we used the following criteria:

At least one clinical manifestation of the syndrome (including the non-clotting manifestations) along with the presence of one or more of the antiphospholipid antibodies in any titer:

1) Anticardiolipin IgG and/or IgM
2) Beta 2 glycoprotein I IgG and/or IgM
3) Lupus anticoagulant

It is common to have only one of these antibodies, but some patients have two or even all three. Occasionally various infections might cause a transient elevation in one or more of these tests, so the diagnostic criteria require you to have one or more of these antibodies on more than one occasion at least 12 weeks apart. Notably, many of the patients in our study had low titers of the APS antibodies.

The lupus anticoagulant test has a misleading name because it is not a test for lupus and it is associated with increased clotting, not decreased clotting as the name implies. APS, however, may occur along with lupus, as well as Sjogrens syndrome or rheumatoid arthritis. It may also occur on its own. Most APS experts are either rheumatologists, hematologists or obstetricians, but most physicians are familiar with these tests, they can be ordered at any lab and they are relatively inexpensive.

Once a diagnosis of APS is made, there is no indication to repeat the antibody tests. APS is not known to just resolve, but the antibodies are known to wax and wane over time. There are many stories of patients who have had their levels fall into the normal range when their physicians repeatedly tested their antibodies and when told they no longer had APS and could stop their blood thinners, they went on to develop stroke or other major clotting events.

Regarding imaging tests, CT or MRI scans are used to test for stroke or other blood clots in APS patients with suspicious symptoms and clots in this syndrome can be found in any blood vessel. Some APS patients have “white spots” on brain MRI scans; these are felt to represent very tiny clots. Ultrasound is commonly used to test for blood clots in the legs when there is new leg pain and/or swelling.

How common is APS?
APS is not rare. It has been estimated to affect approximately 1 out of 100 people (1% of the population). It is, however, underdiagnosed.

We do not know how many POTS, NCS or OH patients have APS, but Dysautonomia International recently funded a research project designed by Dr. Svetlana Blitshteyn to try to shed some light on the topic of autoimmune markers and autoimmune conditions in patients with POTS. Dysautonomia International will make an announcement when Dr. Blitshetyn’s study results are released.

We also do not yet know how often autonomic disorders occur in APS patients.

Should all patients with POTS be tested for APS?
Because this is a newly described clinical association, we have a lot to learn. At this time, I believe all POTS patients should be tested for APS; other physicians might disagree. At the very least, I believe all POTS patients with any of the following should be tested for APS: migraine, memory loss, balance trouble, livedo reticularis, Raynaud’s phenomenon, history of miscarriage, another autoimmune condition, a family history of blood clots or a family history of autoimmune disease. These were the most common findings in the patients in our study. Also, of note, three of the 15 APS patients included our study also had Joint Hypermobility Syndrome (JHS).

Raynaud’s Phenomenon Livedo Reticularis

The reason I believe all POTS patients without an apparent cause should be tested for APS is that POTS caused by APS might improve with a trial of aspirin, clopidogrel, heparin, warfarin and/or IVIG. Many of these agents increase the risk of bleeding, however, which makes many physicians not experienced with APS nervous about using them in APS patients who have not had a clotting episode. Because APS is a very hypercoagulable condition, however, APS patients (even those on high doses of blood thinners) have a much greater risk of clotting than bleeding. Despite this, Professor Hughes believes that many APS patients have been under-treated due to physician concerns about bleeding.

Additionally, APS is a serious medical condition and early diagnosis can help reduce the risk of major complications. If you have one or more of the APS antibodies, you are at an increased risk for blood clots. If you are aware you have one or more of these antibodies, you can reduce your risk of blood clots by avoiding cigarettes, birth control pills or hormone replacement therapy. You can also be sure that if you have other vascular risk factors, such as high blood pressure, high cholesterol or diabetes, they are treated aggressively. Aspirin has also been shown to reduce the risk of arterial events in patients with APS antibodies. Additionally, Professor Yehuda Shoenfeld’s research has shown that vitamin D levels are low (less than 15 ng/ml) in half of patients with APS and that low levels are associated with an increased risk for clotting and non-clotting manifestations of the syndrome. So it makes sense for these patients to also be treated with vitamin D.

How is APS treated?
In addition to the points made above, APS patients who have had an arterial or venous clotting event are generally treated with blood thinners (usually warfarin or heparin) for life. There are also several newer oral anticoagulants, one of which is presently being studied in APS patients in London. Until this data is available, these drugs are generally not recommended for most APS patients. APS patients with recurrent miscarriages are treated with aspirin and usually heparin (warfarin is contraindicated in pregnancy) throughout their pregnancy and for at least 6 weeks after delivery.

Importantly, Professor Hughes has found over the years that many of the non-clotting manifestations of APS often improve significantly or may even be completely aborted with anti-platelet agents such as aspirin or clopidogrel, and/or warfarin or heparin. He has also found this to be true for autonomic symptoms in some APS patients. Two patients in our study with POTS that did not improve with standard APS treatments (despite improvement of other APS manifestations) improved significantly with regular intravenous immunoglobulin (IVIG) therapy. Unfortunately, IVIG is very expensive and many insurance companies require more data than two case reports before approving its use for a specific indication.

Where can you find additional resources on APS?
Dysautonomia International has a brief explanation of APS on its website, as well as some links to APS related journal articles and non-profit organizations. You can find a physician experienced in APS by going to APSAction.org, an international organization started in 2010 to improve collaboration amongst APS experts and to facilitate APS research. An excellent patient forum on APS is HealthUnlocked Hughes syndrome and Professor Hughes has written a great book for patients entitled, Understanding Hughes Syndrome: Case Studies for Patients.

Dr. Schofield is a Johns Hopkins trained internist who has developed an interest in APS over the last few years. She currently practices in Denver, Colorado but plans to develop a multi-disciplinary (i.e. involving physicians from many specialties) APS clinic in an academic environment and is currently exploring options for where best to do this.

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So, You Want a Service Dog?

What Dysautonomia Patients Should Know About Antiphospholipid Syndrome