Providing Culturally Responsive News and Commentary to build Healthy Families and Communities.
Saturday, February 17, 2018
Did you know Sickle Cell Anemia is a Rare Disease?
A Day of observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families like: Diamond-Blackfan Anemia, Hemophilia A
Sickle Cell Anemia. (NORD)
National Organization for Rare Disorders (NORD)
TOVA Community Health
Primary Specialty Care
213 Greenhill Ave.
Wilmington, DE 19803
(302) 429-5870-p
(302) 429-9284-f
Wednesday, February 7, 2018
Tips to Keep your Bond Strong between your partner despite living with a Chronic Illness
Living with a Chronic Medical Condition such as sickle cell anemia, diabetes, lupus or multiple sclerosis can take a toll on a your relationship. Here are some ways to keep the bond between your partner strong. Experts say, Communication is Key.
Ways to Keep Your Relationship Strong Despite a Chronic Illness
Don't let chronic illness weaken the bond between you and your partner.
Having a chronic illness such as diabetes, arthritis, or multiple sclerosis can take a toll on even the best relationship. The partner who's sick may not feel the way he or she did before the illness. And the person who's not sick may not know how to handle the changes. The strain may push both people's understanding of "in sickness and in health" to its breaking point.
Studies show that marriages in which one spouse has a chronic illness are more likely to fail if the spouses are young. And spouses who are caregivers are six times more likely to be depressed than spouses who do not need to be caregivers. Clinical psychologist Rosalind Kalb, vice president of the professional resource center at the National Multiple Sclerosis Society, says, "Even in the best marriages, it's hard. You feel trapped, out of control, and helpless." But with patience and commitment, there are ways you and your partner can deal with the strain a chronic illness can place on your relationship.
1. Communicate
Relationships can suffer when people don't discuss problems that have no easy or obvious solution, Kalb says. And that lack of discussion can lead to feelings of distance and a lack of intimacy."Finding ways to talk openly about challenges," she says, "is the first step toward effective problem-solving and the feelings of closeness that come from good teamwork."
Marybeth Calderone has limited use of her legs and hands because of a neurological disorder called Charcot-Marie-Tooth. Her husband Chris says that figuring out when to communicate is his biggest challenge.
"My wife gets frustrated with herself when she can't do things, like organize our 8-year-old daughter's desk," he says. "A lot of times, I'm not sure if Marybeth is angry at me or with her condition. Often, I try to figure it out on my own and don't say anything.”
The right level of communication is key. Boston College social work professor Karen Kayser says, "If the couple is consumed with talking about the illness, that's a problem. If they never talk about it, it's also a problem. You have to find a middle ground."
2. Ease Stressful Emotions
"The best way to deal with anxiety is to identify the root of the worry and find strategies and resources to address it," she says. Here are four positive steps you and your partner can take to help one another find relief from stress.
- To feel more in control, learn more about the condition and how to tap into available resources.
- Consider counseling. You can go together or separately for counseling with a therapist, minister, rabbi, or other trained professional. A good choice for building coping skills is to work with someone trained in cognitive-behavioral therapy.
- Watch for depression. Sadness is a normal response to chronic illness. But clinical depression doesn't have to be.
- Acknowledge the loss of the way your relationship used to be. You are both experiencing it.
Continue Reading Below
"On a recent trip with friends," Mimi says, "I was content sitting near the beach drawing. But Jonathan wanted me to stroll with the group on the beach, which meant switching to a wheelchair with oversized wheels. Aesthetically, I didn't want to do it, but he convinced me. Sometimes you have to do things to please your partner."3. State Your Needs
Kalb recommends that if your the person with the illness be clear and direct about what you want because your partner isn’t a mind reader.
Chronic illness can often shift the balance of a relationship. The more responsibilities one of you needs to take on, the greater the imbalance. If you're providing care, you can start to feel overwhelmed and resentful. And if you're receiving care, you can feel more like a patient than a partner. Kalb says such a shift can threaten self-esteem and create a huge sense of loss.
By Karen Bruno
WebMD Feature Reviewed by Kimball Johnson, MD on November 22, 2012
TOVA Community Health
Primary Specialty Center
213 Greenhill Ave.
Wilmington, DE 19805
(302) 429-5870 ext. 120-p
(302) 429-9284
www.tovacommunityhealth.org
Tuesday, January 30, 2018
Implicit Bias against DART riders at the Wilmington Rodney Square Hub punishes the working class says a social justice advocate
Although I was unable to make the Rodney Square meeting, I am impressed with this millennial who understands to root causes of poverty. Delaware is well on its way to becoming a ‘Corporate Plutocratic State’ which will continue to consolidate wealth, decision-making and power. Sadly, those few people who sat in the board room to make this decision most likely have never had the experience of riding DART nor grasp the importance of a central & convenient hub for transfers. I am not a thug nor a drug-dealer and have appreciated DART's service and having access to public transportation. Most of us are just 1-2 paychecks away from homelessness and the societal symptoms of poverty. I Simply Say.. Soldier On & fight the Good Fight! All the best, Dr. Nina
“This is all about standing up to bullies and fighting back against big business and corporate interests. I saw Governor Carney THURSDAY at LOMA and we had an impromptu meeting. I said excuse me and I told him that people are really unhappy about his Rodney Square decision. He told me they should have been at the meetings. How could an entire community of people fit into his office? Then he told me how he used to ride the bus to Dover when he was working for Senator Biden and how back then Rodney Square was just for working class people. This implied that the homeless and unemployed are not welcomed in center city. Another troubling thing he said was that Rodney Square had become a "Drug Market" and I said to him that the problem of drug abuse is a much larger issue than Rodney Square. This decision to move specific bus stops away from the square will not solve the problem of dangerous drugs and addiction. Finally he said there have been "Two murders" at Rodney Square. I said the thousands of people traveling through Rodney Square every day are not all murderers and drug-dealers. They are mothers, teachers, veterans, nurses, students and retired people trying to get to Doctor's visits. They are handicapped people who have to get around from place to place in a way that is convenient for them. And yes, they're homeless people who have been abused by society trying to get to mental-health evaluations to figure out their issues.
Crime and individuals being seen as "criminals" are the real reason why this decision was made. This is reality despite everything the state says publicly about traffic congestion. Certain bus riders are not welcome anymore.
The rerouting of the buses has dug large trenches between communities. A bomb has been dropped on the relationship between the bus riders and the state. There are now bus routes which have no reasonable connection for the elderly and handicapped. For these people it is impossible to walk blocks to transfer in time to catch the next bus. Not only do they have to walk and wheel-chair long distances- they miss the next bus in the time it takes for them to get there and then they have to wait another hour in the cold for the next bus to come. The buses are always off-schedule so riders don't know what time the next one is coming which makes the wait even more maddening. That wait is like the wait for justice. It takes a patience beyond understanding to get through... These are ELDERLY people and pregnant women waiting in the cold with no shelter over head at the majority of these new stops. And where there are shelters there are no benches to sit on after those long walks they suffer through. Two years ago two bus shelters were removed from Rodney Square along with many benches to deter the homeless from loitering.
I have heard stories from grandmothers who have not made it to doctors appointments. I have heard from fathers trying to get to work that were late and were fired. I heard from a student in law school who had to drop classes. Her story was written about in the News Journal. I heard from a local small business owner that her business now has a large amount of people at the bus stop in front of their front door. The riders waiting in the cold used to catch the bus at Rodney Square. This business owner who has been in the community for over 30 years has some of the same complaints that the big businesses around Rodney Square like Chemours/Dupont, the banks and the law firm (Young-Conaway) have had in recent years. "The riders waiting litter". "There are arguments and smoking: possibly drugs". "The large crowd deters clients from entering my business". And "It's not safe". Unattended children play on the steps. No one from DART or Down-Town Visions cleans up trash or shovels snow or salts the sidewalk in front. There is no police presence at this business like there still is at Rodney Square even though there are far less people at Rodney Square since this negative change occurred. I have heard from an army of people telling me they've had to march from one bus stop to another to catch their bus. They don't know which way to go and this makes no sense to any of them.
And to that I say discrimination doesn't make sense to me either. It is hard: it's hard to deal with and it's hard to understand and I'm tired of it too. I'm not used to it. We can't get used to it. We gotta fight back against it. We need to protest at Rodney Square since the government and business interests do not want certain individuals at the square. We need to FIGHT to go back to the square! People are being hurt because government officials put money from Real Estate developers over compassion for the people and it's NOT OK!”
A voice of a Millennial Social Justice Advocate
Friday, January 19, 2018
Order your 'Sickle Cell Lives Matter TM' T-Shirts today
Sunday, January 14, 2018
Dr. Anderson's research poses insight for how geography impacts your health: What city had better sickle cell transition outcomes-Philadelphia or Atlanta?
American Journal of Hematology
Beyond the transition of adolescents and young adults with sickle cell disease to adult care: Role of geography
Some results for Dr. Anderson's and her
colleagues Dr. Ballas & Dr. Eckman research
colleagues Dr. Ballas & Dr. Eckman research
"Most important among these is that the rate of death in Atlanta was much lower than that in Philadelphia: 5.8% in Atlanta versus 22.2% in Philadelphia during the 10 years after transition. The major cause of death was iron overload due chronic organ damage. It is most likely
that these patients had chronic organ damage due to SCD that required frequent blood transfusions leading to iron overload."
To read more about this paper, go to the
American Journal of Hematology
Received: 3 March 2017 | Accepted: 9 March 2017
Beyond the transition of adolescents and young adults with sickle cell disease to adult care: Role of geography.
All the best,
Dr. Nina
TOVA Healthcare
Sickle Cell Specialty Treatment Center
213 Greenhill Ave.
Wilmington, DE 19805
(302) 429-5870-phone
Friday, December 29, 2017
Join TOVA in the vision for a Neighborhood Medical Home in West Center City Wilmington, DE
Sickle Cell Specialty Center
213 Greenhill Ave.
Wilmington, DE 19805
(302) 429-5870
www.tovacommunityhealth.org
www.tovacommunityhealth.org
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