The Struggle Of Getting A Hypermobility Diagnosis4 min read

When it comes to hypermobility, one of the biggest things that I tend to see is people struggling to get a diagnosis. 

Diagnoses with hypermobility are different from other syndromes or disorders. Read on to learn more about how the hypermobility diagnosis differs from others.

Connective Tissue Disorders, Injuries, and Syndromes

Hypermobility is linked to many different types of connective tissue disorders, making a diagnosis difficult. Symptoms can vary depending on the individual, which can make getting an accurate diagnosis really difficult. 

So, one of the best places to start is actually with your primary care physician.

Let your physician know that you're concerned that you may have hypermobility and what is the best way to get a diagnosis or to be assessed. 

And, with hypermobility, several connective tissue disorders have concerning medical conditions that go along with it. These disorders can pertain to cardiac issues, vascular, and blood vessel issues.

If you're concerned that you may have a connective tissue disorder, you want to make sure that you get those ruled out. Your doctor is the best person to help you do that. 

Connective tissue disorders used to be considered a part of Rheumatology, but are now more in the primary care realm.

But, not every primary care doctor is going to understand connective tissue disorders or hypermobility.

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Don’t be discouraged by a referral

Since not every doctor is familiar with hypermobility, they may have to learn themselves. If not, they may refer you on to somebody who does most diagnoses through an assessment.

In these types of assessments, they will generally look at your joint movements, your height and wingspan ratios, your skin, your bruising, and your abilities.

After assessing these qualities, they will analyze your results and best determine the correct diagnosis. With this, they will also be able to rule out other disorders or syndromes. 

Along with an assessment, they might also refer you to a genetic counselor.

There are at-home genetic tests that you can take, like 23andMe, or Ancestry.com and their DNA testing options. But, a genetic counselor will have far more accurate results and insight than an at-home test. 

A genetic counselor specializes in genetic testing. They will be able to tell you what benefits you can expect to receive, but drawbacks as well.

As much as we'd like every test to be definitive, and tell us exactly what we need to know, unfortunately, they don't always work that way. 

Here are a few things to keep in mind with genetic testing -  if you take a genetic test, it may come up positive, but you may not have a syndrome.

This means that you can test positive for something that you don't have. Or, you can also test negative, but still, have a disorder. 

Additionally, you can also have a disorder that does not have a known genetic marker yet. This means you fall into the category where they know it's a problem, but we don't actually know what the genetic component is.

If that happens to you, then you're still going to register as negative. But that doesn’t mean that you aren’t experiencing symptoms from that disorder or another.

When genetic testing is most helpful

The instances where genetic testing is most effective are for things like family planning, research.

Other uses are for if you have a specific case where you have some specific health concerns that need to be identified and addressed. 

When it comes to genetic testing, there are a few things to keep in mind.

For one, insurance does not typically cover genetic testing, and along with that,  it tends to be expensive.

Two, not all genetic testing is equal. Figuring out which sets and types of testing that is going to most benefit you can be difficult.

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The cons of genetic testing

The reason why insurance doesn't typically cover genetic testing is that it doesn't usually change your treatment program.

Even though you may have a diagnosis determined by genetic testing, treatment programs tend to address your symptoms and the issues that you're having.

They won't address your genetic markers. 

So, regardless of what your genetic tests show, your treatment is still going to just address what's going on for you. Your genetic markers won’t alter that treatment process, per se.

Whether you're having pain issues, dislocation issues, or movement issues, you're still going to treat them the same.

Your diagnosis

In terms of a diagnosis, remember, having a specific name for your problem isn't the most important thing. It is more so important that you are getting the treatment that you need to be moving better and living better.

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You Have Been Diagnosed With A Hypermobility-Related Syndrome...

Now What?

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