Ehlers-Danlos syndromes affected person shares how she was diagnosed



As a kid, Lina Ahnberg expert bruises all in excess of her human body and intense joint suffering.

Issues obtained so negative, Ahnberg says, that teachers suspected boy or girl abuse.

But Ahnberg was just lately identified with Ehlers-Danlos syndromes (EDS), a team of rare, inherited disorders that lead to pretty flexible joints and stretchy, fragile pores and skin.

“I was relieved to lastly have a analysis — even however there is no cure,” Ahnberg, 21, told SWNS.

“I found that a good deal of medical practitioners didn’t know what EDS is and that if you existing a record of signs or symptoms they can be aspect of a greater dilemma,” she included.

The Sweden student stated she “can’t keep in mind a time in which I haven’t expert ache.”

She reported her bruising, baby-like skin and long-term back again ache were long “dismissed” by wellness pros as tension.

“I was relieved to ultimately have a diagnosis — even while there is no get rid of,” mentioned Ahnberg, 21. Lina Ahnberg / SWNS

Nonetheless, the most straightforward of responsibilities — like getting a discussion or using a shower — tired Ahnberg so a great deal that she would have to relaxation.

She also suffered stomach cramps and nausea.

“From an early age, I experienced bruises on my physique to the position that my kindergarten teacher would question my mom and dad if anything was Ok at house,” Ahnberg recalled.

“My stomach problems — discomfort and constipation — brought on me to develop an ingesting disorder at 8 years outdated, and I then was diagnosed with anorexia, which virtually took my everyday living,” she continued.

She said her indicators worsened by her teenage yrs and new types fashioned, together with inappropriate sinus tachycardia, which is an abnormally higher resting coronary heart charge.

Doctors feared she would hardly ever recuperate from the anorexia, deeming her “a hopeless circumstance that was considerably too long gone.”

She said her bruising, baby-like pores and skin and long-term back ache were being “dismissed” by wellness professionals as strain. Lina Ahnberg / SWNS
EDS is approximated to impact 1 in every single 5,000 newborns throughout the world. Lina Ahnberg / SWNS

In October 2023, she last but not least found aid.

Armed with a folder that contains her medical heritage and indicators, Ahnberg went to see a medical doctor at the Ultuna Health and fitness Centre in Uppsala, Sweden.

“I understood this health care provider was keen to pay attention to folks with these indications. He evaluated my hyper-mobility and went via all the distinct standards for EDS,” Ahnberg reported.

“I was so relieved — I remember crying for days, not with disappointment, but I was relieved that after 21 many years somebody last but not least came and said it was actual,” she shared.

EDS is approximated to affect 1 in just about every 5,000 newborns around the globe — and there is no get rid of for the 13 connective tissue ailments.

“I assume it is crucial for persons to comprehend that EDS is way a lot more than just being flexible and possessing stretchy skin,” Ahnberg reported.

“EDS will come with a large amount of comorbidities,” she mentioned. “Mine have impacted my lifestyle just as considerably as EDS by itself.”

“The hardest portion of EDS is not the disease — it is all the distinct hospital appointments I have to have,” Ahnberg mentioned. Lina Ahnberg / SWNS

Cure choices — this kind of as bodily treatment, vitamin D health supplements to bolster bones, and remedies for joint agony — assist control indicators.

“Even however I am healthier now and recovered from my ingesting dysfunction, I am even now working with the tummy challenges,” Ahnberg complained.

“The toughest element of EDS is not the health issues — it is all the various healthcare facility appointments I have to have,” she lamented. “I plan my months about my appointments.”



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