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Facebook Medical Disease support Groups: What they are good for and What they are terrible for

graves eye disease support groups

I am a physician, eye surgeon, oculoplastic surgeon and neuro-ophthalmologist. In the last five years I have participated in several Facebook support groups for several disease such as Graves Disease and Bell’s Palsy among others. I joined these groups to help patients gain better information, see what patient’s concerns are where they may be expressed diffierently than in their doctor’s office, and to see where the medical profession may fall short. It has been a great experience largely but I have learned from my experience on Facebook support groups what I think are good things that I see patients do and what I think are bad things patients do on facebook pages. I am going to review a couple of those things from a physician perspective and give my humble opinion on what can be helpful and actually very hurtful for facebook support group patient participants.

Using a Facebook Support Page for Support

This has been the single most helpful thing I have seen on the Graves and Bell’s palsy support group pages. Being diagnosed with Graves disease, Bell’s palsy or any other disease for that matter can be terrifying, isolating and scary. When one looks on the internet there are horror stories that patients have posted along with photos of worse case scenarios. A Facebook support group helps patients find other patients who have their disease, have gone through it and triumphed from it. Though as a doctor I have seen and treated countless patients with Graves disease or Bell’s palsy I personally have not experienced having the diseases myself. As a result I cannot honestly tell a patient “I know how you feel”. I can’t. Maybe I can say “I can try to understand how you feel and I imagine…” at most. The facebook support group participants have been in the newly diagnosed Graves patient’s shoes. They have had surgery like Bell’s palsy patients who need gold weights in their eyelids to help them close. This can provide emotional support which can be helpful especially with diseases like Graves and Bell’s palsy which are not as common as say Diabetes or High Blood Pressure.

Using Facebook Support Pages for Alternative Supportive Treatments

Many patients on Facebook medical support group pages can advise other patients about supportive treatments that may help their disease. For example on the Graves disease site, I have heard patients recommend types of prism brands that may be better or on the Bell’ palsy support group I have seen patients recommend to others different therapy specialists that may be helpful. These are great sources of information of supportive information that can help patients deal with unique diseases.

Using Facebook Support Pages to find Physicians or even topics to ask their Physician

The facebook support pages can be extremely helpful to find specialists in specific diseases. Questions I have seen are “Who is a Graves Disease specialist in Denver? Or Does anyone place Gold Weights in the eyelid in Colorado?”. Patients can offer other patients doctors they like or feel share expertise with certain diseases. Sometimes once a patient is diagnosed with Graves disease, Bell’s palsy or Drooping eyelids it may be difficult to find a specialist in their state. Facebook support groups can help with this.

Also, facebook can help with patients who talk to other patients on a facebook page who may hear “My doctor put me on selenium when I was diagnosed with Graves disease”. They may then ask if selenium is helpful for them. Facebook serves to increase knowledge of a disease and in short, increased knowledge by a patient is helpful for both the doctor and patient. I want my patient to ask questions and know as much as possible.

The following are several things that Facebook support are not good for patients to do:

Evaluating whether you should have a specific medical treatment based on the opinion of the facebook page support group members

The decision to have a treatment, medication or surgical procedure for any disease is based on a discussion of the risks and benefits for the patient with their physician. Taking a straw poll on a facebook page for “My doctor recommended steroids for me for Graves disease…is it worth it?” is foolish. Why is that? Treatments are determined by large studies involving a large number of patients. Ideally, some patients are given treatment while others get a sham treatment (also called a control). We then see if the treatment worked compared to patients who got the sham. We also look at complication rates and other things such as patients who don’t finish the treatments. In graves disease, the EUGOGO trial was a landmark study to look at these things. Ideally, your physician for your disease should be savvy with these studies and be up to date with the most recent data. They should help guide you choose a treatment (or choosing not to have a treatment) if that fits you as a patient. Using facebook to make personal medical decisions based on what people on the support group say would be like saying “Hey I have chest pain. My doctor says I may be having a heart attack and need to go to the hospital to get checked”. Then someone replies “Man, don’t go to the hospital if you have a heart attack. My mom did that and she ended up dying”. Then you stay home…… and die. It sounds crazy but using an individual result to guide your treatment or decision to get treatment is just that..crazy.

I have a further specific example. The decision to have Radiation, Steroids or Surgery for Graves disease is based on the individual patients medical history and severity of graves that they have. I had a patient who was a 3 pack a day smoker and Graves patients. It is well known that smoking makes graves worse, increases the chance it lasts longer and increases the risk of you going blind. I don’t think the studies even include 3 pack a day smokers in their studies because it is such a high rate of smoking and they just can’t find enough of those people to have any high volume studies with. The patient failed steroids,radiation and needed orbital decompression twice. She went on facebook and advised other patients “never get steroids or radiation because it doesn’t work”. Oh yeah..she failed to mention to these patients on the page that she smoked 3 packs a day. Get the picture. When people advise you on facebook, you don’t get the whole picture. It is a very dangerous move to go on their advice for your own personal medical decision making.

Throwing out a random symptom and asking if it is an early or more serious sign of the disease

I have been on the Bell’s palsy page and random people will post “My eyelid twitched last that the beginnings of Bell’s palsy?” On the Graves facebook support group someone may ask “My eyes are dry…is that early Graves?” Inevitably, a bunch of people will say “Yes that’s how mine started!”. Of course that is true for those people. The reality is that eyelid twitches and dry eyes are extremely common. In fact 55% of the population has dry eyes. The vast majority of them in fact don’t have graves eye disease. Going on a disease support group to find out if that is your disease without seeing a physician is a huge mistake for several reasons. First off, without a physical exam no one can tell you if some symptom is the beginning of any disease. Second, by getting advice on facebook you may incorrectly think you have a disease. On top of that, you may incorrectly not realize that you have some other disease that is not on your radar. I had a patient once who came in with the complaint of “I can’t see well out of my eyes..I think it is graves and I tried selenium for 4 weeks before coming in. It is not working”. That is ok except she didn’t actually have graves disease and her decreased vision was due to glaucoma. Not treating it for 4 weeks while taking an herb that is completely ineffective for glaucoma, only gave more time for her glaucoma to suffer permanent damage. Get the picture?

Facebook disease support groups don’t have a required physician mediator. There are limited restrictions most moderators place on commenters other than banning people who engage in negative, or trolling comments . That is great in some ways but also allows some things that aren’t in the best interest of patients to occur. I think this article is a helpful guide for patients to learn how a physician see facebook support groups have been very helpful or hurtful. Hope this helps!

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