When a person is diagnosed with a life-threatening illness, the whole family suffers.
Understanding this on a personal level, Margate resident Rochelle Ostroff-Weinberg recently held a support group for spouses and loved ones of people with MDS in her living room.
She is the widow of Robert J. Weinberg, who died in April after fighting myelodysplastic syndrome, or MDS, for 15 years.
The event, held July 27, was called "The MDS Spouse: Coping and Caring" and Rochelle said its purpose was twofold:
First, to pass on the knowledge she and her family acquired during the years of coping and coming to terms with her husband's illness.
"The other family members can feel lost, helpless, scared, worried, traumatized, confused or conflicted," Rochelle said. "I know personally. Bob had MDS for 15 years. I am a veteran spouse."
Second, to continue to support the MSD Foundation, which Robert was involved with as an executive board member.
"At Bob's funeral, I set a promise in front of 150 people present to do good, important work for and through the MDS Foundation," Rochelle said. "Yet, I wanted to make it mine and something that would reflect a component of support needs to which I related personally and genuinely. I see that my role now, to reach out to others who share - are living through - a similar experience."
The MDS Foundation, established by an international group of physicians and researchers to provide an ongoing exchange of information relating to MDS, was the first foundation in the world dedicated solely to this disorder. Robin Roberts, the anchor of ABC's morning show Good Morning America, also has MDS.
Rochelle said the support group was both well-received and well-attended by the community and she plans to host more, possibly in October and April.
"It was great to share and experience with others who are living with MDS," she said. "It was hopeful to see others still living a good quality of life with MDS."
Contact Elisa Lala:
If you go
MDS Foundation's Educational Patient-Caregiver Forum
9:30 a.m. to 2 p.m. Friday, Aug. 23
Abramson Cancer Center's Patient and Family Services Conference Room, 3400 Civic Center Blvd. 1 West Pavilion, Philadelphia, PA 19104
To find additional information and an event agenda, visit pennmedicine.org/perelman/visitor_info/directions.html. To learn more about the MDS Foundation or the disorder, visit mds-foundation.org.