Ehlers- Danlos Family is in Dire Need for Health Care Coverage


Many EDS families are having problems dealing with the  Health Insurance Marketplace. 


Sabrina“Spending hours on the phone talking to various health care representatives was not the way Summerwood resident Sabrina Carr had planned to spend her holiday break with her family.

Sabrina, who was diagnosed with fibromyalgia, Peripheral Neuropathy, Myofascial Pain Syndrome and Costochondritis and three of their four children were diagnosed with Ehlers-Danlos syndrome which is a group of inherited disorders marked by extremely loose joints, hyperelastic skin that bruises easily and easily damaged blood vessels.

The need for health care coverage was dire for the Carr family.”

“Sabrina first applied for health care through the Health Insurance Marketplace Dec. 16 by phone after she had been trying to register online for two months It was on Dec. 16 when my request finally went through, I selected my plan, she said I would hear from Aetna to make my payment,” Sabrina said in an email. “During Christmas week, I realized I never got anything in the mail. I called Aetna and they had no record of me. I have been on the phone 10-15 hours with this usually twice a day, trying to sort this out.”

After several different conversations with representatives, they all assured her that her health care for her and her family would effective starting Jan. 1.

“My husband is self-employed so the Marketplace seemed like it was going to be great for us. We had a catastrophic plan for him and the kids because I was denied due to my other diagnoses,” Sabrina said. “We had to have two separate plans, one for me and another for the rest of the family. We were spending about $800 a month for each plan.”

The past summer proved to be the most difficult for the Carr’s since her daughter, Sammy’s jaw and hip dislocated itself numerous times and her son, Blake, also had numerous problems. Both kids ended up in a wheelchair until after Christmas because they could not support themselves.

Their doctors requested the children go through genetic testing for a positive diagnosis of Ehlers-Danlos syndrome but they had to make the appointments without knowing whether they would have health insurance or not through the Health Insurance Marketplace.

“We arrived at the appointments and thank goodness they were willing to work with us since we didn’t have our member numbers or cards,” Sabrina said. “It was very frustrating and terrible because I would call Aetna and they would say there was no record of my information. I would then call the Health Insurance Marketplace to see about our member number; they would put me on hold. We felt like we were in limbo for weeks.”

The Carr’s were officially informed Jan. 13 that they were insured through the Health Insurance Marketplace so Sabrina paid the premium and received a member number.

“It is a relief,” Sabrina said. “Thank goodness I understand the information and how the website is supposed to work; I believe that is the only way I was able to get through the process. There needs to be a better system put in place that addresses the issues of the website We are just excited to finally have health insurance coverage so we can make all of our appointments for this year.”

The  Health Insurance Marketplace needs a lot of work to be able to handle those with chronic diseases like Ehlers-Danlos Syndrome .

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