The age at first diagnosis peaked in the age group
5–9 years for men and 15–19 years for women
(see figure 2). There was a significant difference of 8.5 years in the mean age of diagnosis between men and women (95% CI: 7.70 to 9.22): 9.6 years in EDS (95% CI: 6.85 to 12.31) and 8.3 years in JHS (95% CI: 7.58 to 9.11).
Does Ehlers-Danlos syndrome get worse with age?
Many of the problems associated with EDS are progressive, meaning that
they get worse over time
.
At what age is Ehlers-Danlos usually diagnosed?
Affected people have extremely fragile, sagging skin. It is usually diagnosed
before the age of 2 years
.
What kind of doctor can diagnose Ehlers-Danlos?
The only doctors whose business it is to diagnose EDS are
geneticists
(the specialists in inherited conditions).
How do I know if my child has EDS?
Very loose small joints
(fingers), but most often not the large joints (knees, elbows, hips, shoulders) Distinct facial look with a thin nose, thin lips and hollow-looking cheeks. Thin “see-through” skin where blood vessels are seen just under the skin in areas that are not typical. Normal scar formation.
What does EDS pain feel like?
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.
Do Rheumatologists treat Ehlers-Danlos?
The rheumatologist can play
an important role in the diagnosis of EDS
and is central to the ongoing management of many EDS patients.
Is Ehlers-Danlos a disability?
Just having a diagnosis of Ehlers-Danlos
is not enough to obtain an award of disability
benefits. Your attorney must work with your doctor to document not only the medical details of your Ehlers-Danlos, but also the functional impairments that it causes.
Can you have EDS and not know it?
Many of those suffering from EDS are never diagnosed during their lifetimes
. They suffer in pain for many years and die – still not knowing why they had the pain. EDS Awareness is critical! Only 5% of EDS patients are correctly diagnosed.
Can you have a baby if you have EDS?
Pregnancy-associated complications reported in EDS patients include miscarriage, ectopic pregnancies (pregnancy outside the uterus), and premature delivery. There is an increased risk of a preterm birth or late abortion in EDS patients. Breast changes are common due to the hormonal changes related to pregnancy.
Are you born with Ehlers Danlos?
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.
What is the life expectancy of someone with EDS?
People affected by vascular EDS have a
median life expectancy of 48 years
and many will have a major event by age 40. The lifespan of people with the kyphoscoliosis form is also decreased, largely due to the vascular involvement and the potential for restrictive lung disease.
Does Ehlers-Danlos make you look older?
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”.
Can EDS skip a generation?
In reality,
the altered gene did not skip a generation at all
, but the symptoms of the disease were mild or went undetected so that it may have appeared to miss a generation.
Does EDS affect the eyes?
Ophthalmological abnormalities in EDS include but
are not limited to myopia, retinal detachment and glaucoma
. Some of these can be vision-threatening. An optometrist or ophthalmologist should establish a comprehensive baseline for a person with EDS, including a complete eye exam and history.
