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5 Tips from Benjamin Franklin for vascular EDS

Benjamin Franklin once wrote, "an ounce of prevention is worth a pound of cure". This statement holds true in medicine today. Patients are always better off preventing something from occurring rather than fixing a problem after it arises.

For instance, while you can never entirely eliminate your chances of having a heart attack, you can avoid bad habits and/or perform good behaviors that can limit your risk. Avoiding smoking, exercising regularly, and healthy eating can reduce the chances of a heart attack. Once a heart attack occurs, however, the only options for a recovery are medications and surgical procedures that leave the patient wishing he had invested in an "ounce of prevention" instead.

As vascular EDS patients we can learn something from our founding father, Mr. Franklin. We have vascular EDS. It's a regrettable hand to be dealt. And although we can't change the hand, we can change how we play it. We can and should do everything in our power to stay healthy! Following these five tips will reduce our risk of vascular events and go a long way towards our longevity.

NOTE: All medical decisions should be made in consultation with your doctor. Please use the tips below to inform your conversation and the personal action plan that you and your doctor develop.

Five tips to reduce the risk of vascular events:

1. Monitoring Blood Pressure ("BP"): Vascular EDS is a disease that affects the blood vessels, making them 'weaker' than the average person. Therefore, taking extra stress off your blood vessels may be one way to reduce the likelihood of vascular events such as aneurysms, artery dissections, and ruptures. Monitoring your blood pressure is a first step to understanding what actions to take to get your BP in line.

Most vEDS specialists recommend keeping your blood pressure in the normal range or even the low-normal range. Once you identify your target, you can use the techniques below to keep your blood pressure in your target range. Consult your primary care physician to establish the correct target for you.

2. Medication: Many of us will need a medicine to help lower our BP to the target range. Medicines such as beta-blockers and angiotensin receptor blockers have been tried in vascular EDS patients. There is only one beta blocker, Celiprolol, which has been tested in a clinical trial with actual vEDS patients (see BBEST Trial).

While not FDA-approved in the United States, it is a relatively low-cost generic in other countries, which is approved and widely available in those regions. US patients can purchase it through several online pharmacies in Canada, with a prescription from a US-based physician. Your physician's decision on whether to prescribe the drug will depend on his or her comfort with this medication. Many United States physicians believe there are alternatives readily available in the US which can work just as well, although they have not been tested in a study like the one referenced above.

3. Imaging: Many experts in vascular EDS recommend regular imaging, as often as every year. CTA's (a CT Scan which specifically evaluates our blood vessels) and MRA's (an MRI scan to evaluate our blood vessels) are tools to determine the integrity of our arteries. Periodic imaging allows a care team to monitor changes and determine when to take action. Imaging allows us to be proactive in choosing how to address potential issues rather than waiting to react. Proactively addressing issues has shown to result in better outcomes for vEDS patients.

4. Healthy Lifestyle: A healthy diet and regular exercise are critically important to overall health, whether or not you have vascular Ehlers-Danlos syndrome. However, vEDS patients benefit significantly from the benefits of healthy living, including:

  • Eating less fatty foods: reducing your intake of fatty foods can lower your cholesterol and prevent plaque build up in our arteries.

  • Eating less sodium: Low salt diets are known to prevent high blood pressure.

  • Exercising more: Physical activity is important for good overall cardiovascular health and can lower blood pressure. The stronger your heart is the easier it can pump blood throughout your body.

See our Diet and Exercise page for more information on what kinds of exercise to do and what to avoid. More information will be added to our diet section in the near future.

5. Avoidance: We know that certain activities increase our blood pressure and put stress on our blood vessels. Doctors caution us to avoid strenuous activities that might drive surges in blood pressure. While it's important to exercise as a part of a healthy lifestyle, we must be aware of activities that safely keep us in shape and those that put undue stress on our bodies. See our Diet and Exercise page for more information.

Having vascular EDS is a tough battle. However, there are still things we can do to help ourselves stay healthy. Each day is a chance to put ourselves in position for success. After all, an ounce of prevention is worth a pound of cure!

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