Why do people with EDS need feeding tube?

For patients with hEDS, POTS and concomitant GI symptoms, oral fluid and nutrition intolerance stymies the attempts to maintain hydration leading to worsened fatigue and malnutrition. The clinical team often finds itself forced to use IV fluids and tube feedings.

Does Ehlers-Danlos affect eating?

The women with Ehlers-Danlos showed significantly more gastrointestinal symptoms and food allergies and intolerances, a greater history of these disorders, a higher risk of currently developing eating disorders and a lower body mass index than the women in the control group.

Do people with EDS have stomach issues?

Patients with hypermobile EDS (hEDS) show GI symptoms related to the gut and often meet the criteria for disorders such as indigestion and irritable bowel syndrome. The presence of GI symptoms in EDS patients influences their quality of life.

Can EDS cause organ failure?

People who have vascular Ehlers-Danlos syndrome are at risk of often fatal ruptures of major blood vessels. Some organs, such as the uterus and intestines, also may rupture.

Can a person recover from a feeding tube?

A person may recover some independence.

Tube feeding may be given to support the person during initial recovery, when outcomes may be unknown. There will come a time when it's possible to assess further if a certain level of recovery can be reached.

Living with EDS: All about my feeding tube! - FAQ

Does feeding tube mean end of life?

Tube feeding is used when a person cannot eat and drink enough to stay alive or when it is not safe for the person to swallow food or liquids. Tube feeding can keep a person alive for days, months or years. But, people can die even when life supports are used.

What is the life expectancy of a person with a feeding tube?

Patients who receive a percutaneous feeding tube have a 30-day mortality risk of 18%–24% and a 1-year mortality risk of 50%–63%. In a well-designed prospective study, Callahan et al. followed 150 patients with new feeding tubes and varied diagnoses, and found 30-day mortality of 22% and 1-year mortality of 50%.

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.

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”.

Why are people with EDS thin?

Ehlers-Danlos syndrome (EDS) is a disease that weakens the connective tissues of your body. These are things like tendons and ligaments that hold parts of your body together. EDS can make your joints loose and your skin thin and easily bruised.

Does EDS affect bowel?

Constipation is also common in patients with EDS and it is thought that a sluggish colon and difficulty with evacuation of the bowel are key causes.

Is EDS linked to autism?

Recent research suggests that EDS may share strong links with autism. Case studies have previously been published identifying individuals who are both on the autism spectrum and have a diagnosis of EDS.

Do people with EDS get sick more often?

EDSers often have a lowered immune system, possibly due to chronic stress on multiple body systems or an IgG-3 deficiency. People with EDS seem to get more infections than people without EDS, and these infections often have similarities.

Can EDS cause malnutrition?

“Rest and Digest”), and inflammation in the setting of gut-related immune dysfunction or dysbiosis. Nutritional deficiencies in EDS often occur despite: meeting recommended dietary intake goals.

What foods to avoid if you have EDS?

What foods should I avoid? Decrease your intake of foods and beverages containing processed sugar — such as pastries, bread, and soda or cola drinks. It's also important to decrease the amount of cholesterol and saturated fat that you take in, by reducing eggs, whole milk, cheese, and fried foods.

Why do EDS patients need salt?

Salt: Simply put, the more sodium in your body, the means more circulating volume you have, which means a better tolerance level for being upright when we take into account issues such as POTS.

Does EDS qualify for disability?

If you have EDS and are unable to work because of severe symptoms from it, you may be eligible for disability benefits, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

Is Ehlers-Danlos inherited from mother or father?

For a child to be affected both parents must pass on an EDS gene. With each pregnancy there is a 25% chance that each child will have the disorder.

Are you born with EDS?

EDS is something you are born with but symptoms may not manifest themselves until later in life. It is not uncommon for a genetic condition to first become apparent during puberty, alternatively symptoms can be triggered by a trauma, such as a virus, many years down the line.

Is EDS a terminal illness?

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.

Does EDS affect the brain?

Because EDS is a connective-tissue disorder, it is not commonly associated with the brain or the nervous system. However, there is evidence that some types of EDS can affect the brain. Studies have suggested that patients with EDS might be susceptible to damage to brain cells after even a mild traumatic head injury.

Can you live a full life with EDS?

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 painful is a feeding tube?

Your abdomen may be a bit sore for a couple of days where the tube went in. It might feel like a pulled muscle. Your doctor will give you pain meds for the first day after the surgery. A dietitian will show you how to use and care for the feeding tube.

What conditions require a feeding tube?

What are the dangers of a feeding tube?