Can you live a normal life with Ehlers-Danlos?

General: EDS affected persons can live like normal people; however, they may feel some constraints in their mobility. A person affected with vascular EDS is prone to serious fatal complications like tearing open of a main blood vessel or organ.

Can you live with Ehlers-Danlos syndrome?

EDS cannot be 'cured' but many people learn over time how to control it and live full and active lives. The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing. In addition you should seek referrals for any associated conditions you may have.

How does Ehlers-Danlos affect daily life?

One of the major clinical manifestations in patients with EDS is pain, which may be associated with disability, depression, anxiety, or physical and mental health-related quality of life impairment [6].

Does hypermobile EDS shorten life expectancy?

Patients with the classical and hypermobility forms of Ehlers-Danlos syndrome have a normal life expectancy. About 80% of patients with vascular Ehlers-Danlos syndrome will experience a major health event by age 40 and the life expectancy is shortened, with an average age of death of 48 years.

Can Ehlers-Danlos get better?

There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications.

Consumer story: Living with Ehlers-Danlos syndrome

Does EDS make you look younger?

Due to the collagen in the skin being extra stretchy, many EDS patients experience a lack of wrinkles as they age. This collagen may help EDS patients look younger and can also cause skin to feel extremely soft. Doctor's even describe the skin as “velvet-soft”.

Does Ehlers-Danlos get worse with age?

Many of the problems associated with EDS are progressive, meaning that they get worse over time. Kyphoscoliosis EDS (kyphosis and scoliosis) is a form of Ehlers-Danlos Syndrome that is noted for severe, progressive curvature of the spine.

How serious is Ehlers-Danlos syndrome?

Vascular Ehlers-Danlos syndrome can weaken your heart's largest artery (aorta), as well as the arteries to other regions of your body. A rupture of any of these larger blood vessels can be fatal. The vascular type can also weaken the walls of the uterus or large intestines — which also may rupture.

Is Ehlers-Danlos life limiting?

EDS is a group of connective tissue disorders. In simplest terms, the glue that holds our body together doesn't work properly. There are several different types of EDS and, irrespective of the type, symptoms range from being life changing, to life limiting, to life threatening.

Is it harder to get pregnant with EDS?

Conclusion. Women with EDS have a much higher rate of reproductive problems than would be expected to occur in a general population. Women with EDS suffer with a high incidence of infertility, spontaneous abortions, preterm labor, abnormal uterine bleeding, dysmenorrhea, and severe dyspareunia.

Is EDS a mental illness?

Ehlers-Danlos syndromes (EDS) are a heterogeneous group of hereditary connective tissue disorders characterized by joint hypermobility, widespread musculoskeletal pain and tissue fragility. Psychiatric disorders and psychosocial impairment are common, yet poorly characterized, findings in EDS patients.

Is EDS worse than arthritis?

Conclusion: EDS-HT is associated with a consistent burden of disease, similar to that of FM and worse than that of RA, as well as a broad impact of chronic pain on daily life, which needs to be addressed in the health care system.

What it feels like to have EDS?

I was asked recently to describe what my body feels with EDS. I described the feeling of being tenderized with a mallet all over my body. Not enough to break bones, but hard enough to leave bruises. This is my daily experience even with the aid of pain meds.

Can you work with Ehlers-Danlos syndrome?

Inability to Work Due to EDS

Many people with EDS need to avoid lifting, pushing and pulling, repeated bending and stretching, and staying in one position for long. They may also need to lie down and rest frequently. These restrictions can make even sedentary jobs impossible to perform.

Is hypermobile EDS life-threatening?

Many people with EDS have easily dislocated joints and fragile skin, which is readily damaged. Accidents or injuries may, therefore, be more likely to be life-threatening for these individuals. For those with vascular involvement, the blood vessels are more likely to rupture, with or without cause.

Does EDS affect your hair?

The defects of the collagen previously reported in EDS account for the increased extensibility of the skin (1, 2). It is possible that the altered skin structure results in increased pliability of the skin which may allow the hair follicles to expand.

Do collagen supplements help EDS?

Bottom Line: No established research or clinical experience has proven that collagen supplementation is helpful for persons with EDS! Theoretically, a diet adequate in glycine, proline, lysine, and vitamin C (or supplementation) would support collagen biosynthesis.

How painful is Ehlers-Danlos syndrome?

Chronic pain in the Ehlers–Danlos syndromes, especially in hypermobile EDS, is very common and may be severe. It may be widespread or it may be limited to one area of the body such as a limb. Headaches and gastrointestinal discomfort can occur as well as joint, muscle and nerve pain.

What kind of doctor manages Ehlers-Danlos?

Successful treatment of this complex syndrome requires a team with extensive knowledge of genetics, orthopedics, pediatrics, neurology, neuroradiology, neuropsychology, and neuroendocrinology, in addition to skilled surgeons who specialize in neurosurgery and cerebrovascular surgery.

What triggers EDS?

Causes. EDS happens when your body doesn't make a protein called collagen in the right way. Collagen helps form the connections that hold your body's bones, skin, and organs together. If there's a problem with it, those structures can be weak and more likely to have problems.

How fast does EDS progress?

My geneticist told me that it often takes an average of 10 to 20 years to receive a diagnosis of EDS, with many people not receiving an accurate diagnosis until well into their 40s. As with many medical conditions, EDS disproportionately impacts women.

Can you have Ehlers-Danlos without stretching skin?

Skin and Connective Tissue: People with hEDS do NOT have to have profoundly stretchy skin! Most notably, in hEDS, the degree of softness, stretchiness, fragility, bruisability, and poor wound healing of skin differs from “normal” subjects but is mild in comparison to other types of EDS.

What do EDS eyes look like?

(The cornea is the clear outer layer of the eye.) Changes in the cornea can cause dry eyes and light sensitivity, as well as a blurry vision — symptoms that many EDS patients report. In rare cases, the sclera (the white part of the eye) may turn slightly blue in EDS patients.

Does EDS cause tiredness?

Fatigue is particularly common in hypermobile EDS (hEDS). Contributing factors can include sleep disorders, muscle deconditioning (loss of muscle tone and endurance), headaches, and nutritional deficiencies. It is important to exclude other causes, such as anemia or a chronic infection.

Can you have flare ups of Ehlers-Danlos?

Day 4 of the Photo-A-Day Challenge - What does a flare up (of symptoms) look like for you? "A "flare up" with EDS for me is extreme pain with my joints, a low grade fever, and subluxations of my fingers and other joints. "Today you are actually witnessing one of the longest flares I've had since being diagnosed.