EDS Massachusetts/New England Support Group Recommendations of Doctors/Medical Contacts

This list is provided by our members to help create a broader network of EDS care in Massachusetts and around New England.  

* Please note:  The physicians named in this document have been recommended by various group members.  Not everyone has the same or positive experience.  In some cases, physicians receiving multiple, complex cases might reject or refuse treatment of multiple patients.  Please research the physicians recommended, and notify us (WSALMGCDJM@aol.com) if a doctor has been disrespectful, so that we can update the list, as situations change.  In addition, please know that neurosurgery is considered controversial with EDS in New England, as the surgeries do carry significant risk and some failures.  We recommend the physicians/surgeons with encouragement from members; however, there is no substitute for researching all physicians exhaustively.  

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Student Lauded for Perseverance

  • By Nicole Levy
    swampscott@wickedlocal.com 

    Posted Jun. 3, 2014 @ 5:27 pm 

    Although all of the 203 Swampscott High School Class of 2014 worked hard to receive their diplomas on Sunday, Natali Masarskaya had to work even harder to reach this milestone.

    Masarskaya has undergone 31 surgeries at Boston Children’s Hospital during her eighteen years to treat an extremely rare genetic disease called Jackson-Weiss Syndrome. Due to Jackson-Weiss Syndrome, Masarskaya was born with receded facial bones; and later in childhood, the bones in both her ankles and wrists fused together, and her elbows are now practically non-existent.

    In addition, due to the pressure from the facial bones, she developed Chiari malformations in the cerebellum, the lowest part of the brain which controls balance. Structural defects cause the cerebellum to press on the spinal column, blocking the flow of cerebrospinal fluid back-and-forth from spinal cord to the brain. She has thus undergone plastic surgery multiple times to correct facial abnormalities; and neurosurgery to place and maintain a shunt in her brain, and drain cerebrospinal fluid.

    Life-saving surgery in September, 2012 to shrink her cerebellum threatened to delay her graduation.

    She experienced constant pain; was unable to walk; and her left side did not function properly. Yet Natali prevailed. She had physical therapy for nine months that taught her how to fall correctly, and her walking improved.

    While recovering at home for her entire junior year, she kept up with schoolwork by taking online courses in English, Pre-Calculus and American History. She also had tutors visit her for two months at a time.

    “After the surgery I told my mother (Svetlana Masarskaya), ‘I’m not going to be able to finish high school.’ She told me that if you start something, you have to finish it,” Natali Masarskaya said

    SHS Principal Rozmiarek also lent support to Natali by making sure she had enough credits to graduate. Besides doing additional work over the summer, she was allowed to take classes part-time during her senior year.

    Natali Masarskaya said, “Mr. Rozmiarek means the world to me. I owe him everything. He said to me, ‘We will find a way to make this work.’ He let me come back for my senior year.”

    Masarskaya further credits SHS English teacher Peter Franklin for her success. The two first corresponded by email during the summer before senior year when she requested her upcoming reading list. Franklin recalls that when she first entered his classroom, she handed him a pink and blue rhinestone cloth attached to a microphone to help her follow the class.

    “I said, ‘That’s perfect. It matches what I am wearing today,’” Franklin said at graduation.

    From then on, Franklin would ask her how she was doing every time he saw her. Moreover, he would respond to her emails with compassion. In a recent communication between them, she wrote, “You don’t know how much you mean to me.”

    Franklin said Natali always thoroughly prepared for class, finishing all her assigned reading, which allowed her to actively participate in deep discussions about the works.

    “She has never waivered in her determination to never give up, even though she had every reason in the world to say ‘enough,’” Franklin said.

    At the Seniors Awards Ceremony on May 28, Franklin and SHS health teacher Buck Harris presented Maraskaya with an award for "Outstanding Perseverance, Resiliency, and Intelligence while Overcoming Tremendous Challenges." She found out at graduation that she had won two community-sponsored scholarships.

    Maraskaya will be attending UMASS-Boston next year where she plans to study microbiology, psychology and pre-med. As a result of her experiences, she wishes to become a pediatrician, although she unsure of which specialty to choose.

    Things may remain challenging for Natali. For instance, she visits Children’s Hospital three times a week.

    “I have 16 specialists there; I am pretty much seen in every department,” Maraskya said.

    By the end of the day, Natali often feels exhausted. She also anticipates she will have to be persistent in requesting accommodations from the university, such as a microphone and large-print books. Though talking with her mother, joining support groups on Facebook, keeping in touch with friends with chronic illnesses, and writing on her blog help her to cope.

    Yet Maraskaya says she’s very happy to have graduated on time and with her class.

    “I don’t have to worry anymore about surviving. I am planning where I can go and for how long,” Maraskaya said.
     

Alone We Are Rare, Together We Are Strong

An important part of TCAPP’s mission is to bring together families of children dealing with chronic pain.  The Outreach Program was born with this initiative in mind, and we hope to grow it to include every state.

State Ambassadors have volunteered to be someone to contact if you have questions and they are available to help point families in the right direction.  They will also be putting together several gatherings throughout the year to give us a way to connect.  This community will grow stronger with every person who wants to help – if you are interested in being involved, please contact the ambassador in your state.  And, don’t forget to subscribe to the RSS feed to keep up-to-date on what is happening.