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- My Friend Has Sickle Cell Disease. How Can I Help? (for Teens)
- Loving Someone Who Has Sickle Cell - Health - Nairaland
- American Society of Hematology
This makes me want to extend myself beyond my limitations, and too much of this can lead to crisis. Depression is common when you have been living with such a disorder your whole life. There are days when I just need to be alone, whether because of pain or because of the depression that comes from it. Of course, this is all situational, and it depends on how much the disorder affects your day-to-day living. I am constantly at war with myself when it comes to my state of mind. It is why sometimes I feel it is easier for me to just be single.
This self-doubt has likely destroyed a number of my most recent relationships with women. Women want a man who is confident. A man who will tell her they are going to do something and then deliver upon it.
It makes picturing the perfect relationship hard, because a perfect life merely seems like an unattainable concept. Which is completely unattractive. Dating can be a difficult thing whether you have a lifelong blood disorder or not. Besides having Sickle Cell, there will be a hundred other obstacles for you and your partner to face.
My Friend Has Sickle Cell Disease. How Can I Help? (for Teens)
With this in mind, all I can do is provide a list of qualities to look out for that signifies you may be with the right person. Unfortunately, society has changed so much over the years that displaying genuine concern is no longer common. They want to attend appointments with you: I would never ask someone to attend one of my frequent blood tests, or my check-ups with the consultant.
They comfort you in times of pain and crisis: I often like to just be left alone in bed on my bad days. The thought of being a burden on anyone makes me feel worse; to the point I would rather just alienate myself. But if your partner tries to comfort you by rubbing your aches and pains, cuddling you, or generally just providing moral support, then trust me, she is a keeper. They force you to keep drinking water: As a Sickle Cell sufferer, you absolutely must drink litres of water per-day. But if you find that your partner is routinely shoving water in your hands, and instinctively knows when you need it the most; hold onto them for as long as you can.
They are considerate of your condition when making plans: If you find that your partner is factoring in your disorder when making plans to do things such as going on holiday then it shows how selfless they are. Of course, this would make me more willing to visit one of those countries if she strongly desired it, just to show her I am also willing to suffer through the cold for her. They are considerate in regards to intimacy: When you have a disorder that causes you to exert yourself easily and suffer with pain, it means you may have problems performing in the bedroom from time to time.
Right now, my granddaughter is 15, and she is starting to accept it a little more. I told her I had sickle cell disease and she has a little knowledge about it now, so, it might be easier for her to talk about it. One participant with SCD was so resolute that her children with trait talked to their partners that she took it on herself to share this information,.
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- Sickle Cell Disease (for Parents).
- Reproductive decisions in people with sickle cell disease or sickle cell trait.
I made sure my children talked with whoever they were dating and let them know [they had the trait]. Women participants expressed a strong desire for having biological children even when a clear risk of having a child with the disease was present. I love her dearly and she has the trait.
I wanted a child and God gave me one. One woman with SCT, whose husband did not know he had the trait before having children explained,. If I had known that me and my husband had trait, we could have sat down and discussed it. Whereas some women clearly expressed the desire to have children, some participants decided not to have children because of their perceived severity of the disease. By seeing first hand what the trait did to my sister, [I decided not to] have kids with the trait. For most participants, having children with SCT was acceptable because they did not exhibit the signs and symptoms of the disease.
They turned down the test primarily because of their desire to have a baby and they feared that the fetus would be harmed. As one woman with SCD perceived,. I think it would be hard on a pregnant mother, especially a mother that always wanted a baby. They would be afraid that the test would poke in the wrong way and hurt the baby. But participants indicated that asking the father to get tested prior to the birth was an alternative way to identify the possibility that the fetus had the disease; others decided to wait until the baby was born for newborn testing hemoglobin results.
One woman with SCD who shared with the group that she had an abortion lamented on her experience and the difficult decision she made 18 years ago,. With me it is hard, because I experienced [an abortion]. At the time I was just scared. But when it was done it was always on my mind. Participants had a range of knowledge and acceptability of reproductive options with some discussion centering on the use of temporary birth control methods versus more permanent method such as tubal ligation.
Several of the women already had a tubal ligation after having a child and others were considering it. All the participants were unaware of in vitro fertilization IVF with preimplantation genetic diagnosis PGD as a reproductive option. They had many questions about why and how these procedures were done, the pain involved and costs. In general, most previous psychosocial research on SCD and SCT has been focused on the effects of the disease on people or issues of disclosing newborn screening results.
However, for some participants, decisions were more complicated by the desire to have children and the more recent availability of treatments that provide improved quality of life and longevity Atkins et al. For others, it was not predefined or fixed by religious beliefs. These findings are similar to those of other investigators who note that individual preferences, personal moral judgment, and beliefs and values took precedence over religious beliefs Ahmed et al.
Our finding that a barrier to partner testing for SCT was the perception of pain associated with the phlebotomy and difficulty in convincing their partners to get tested was similar to findings by Gustafson and colleagues Whether people with SCD or SCT had a strong desire to have children or not, most women participants understood the conflict between wanting a biological child and risking the chance of having a child with the condition. Similar to findings by Hill and Asgharian and Anie , women in our study placed a high value on motherhood and their ability to have children, which allowed them to build their own families and family ties.
Although our participants considered knowing and sharing sickle cell status as important to partner choice before pregnancy, they indicated that in reality it is difficult for young people to make these decisions. These findings are similar to Asgharian and Anie , and Duffy n. In contrast to our findings that knowing trait status was perceived as beneficial for planning pregnancy, African American women attending an obstetrics and gynecology clinic reported a general benefit of screening for sickle cell trait but did not see themselves, their partners or their children as susceptible to the disease Gustafson et al.
They also found a positive relationship between an understanding of recessive inheritance and perceived susceptibility to sickle cell disease. Unlike other studies, women and men in our study had a keen interest in preventing the transmission of the disease through educating young people early to know their sickle cell status before a pregnancy, to share their sickle cell status with partners and to consider choosing a partner without the disease or trait to avoid having a child with sickle cell disease.
In our study, the older adults with SCD or SCT also perceived their younger counterparts as being unconcerned about the effects of SCD and needing more education about its inheritance. The insights of the older adults about the potential for grandparents to effectively reach African American teens and young adults has profound implications for interventions on planning for parenthood.
Together these findings are suggestive that education for young people about testing should also include information regarding the recessive nature of sickle cell inheritance and the relatively high prevalence of SCT in people with African, Hispanic, Mediterranean, and Indian origins.
Furthermore, health care professional education is still needed about these same ideas. Several study limitations warrant consideration. Although the focus group participants were recruited from a variety of settings and reached data saturation, the study results might not reflect the experiences of those who are uncomfortable sharing information in a group research setting.
Study results might also reflect the previous education that participants could have received about SCD and SCT, which might have influenced their acceptance of testing. Because the focus groups were conducted for the purpose of getting opinions and input on closed-ended questionnaire items and an educational program for a larger study, participants might not have fully described their experiences about their reproductive decision making and reproductive options about becoming a parent because the format may not have elicited that dialogue as readily.
Loving Someone Who Has Sickle Cell - Health - Nairaland
In summary, we present evidence from older women and men with SCD or SCT of their diverse beliefs, attitudes and feelings about reproductive decisions. They expressed strong opinions about the need to reduce transmission of the disease by educating young people of their sickle cell status before a pregnancy, to share their sickle cell status with partners and to consider choosing a partner with normal hemoglobin to reduce the burden of sickle cell disease on their children.
Our research team will use these findings to develop and test an educational intervention about reproductive options available to men and women who themselves have inherited either SCD or SCT. Declaration of Conflicting Interests. Gallo, University of Illinois at Chicago. Diana Wilkie, University of Illinois at Chicago.
American Society of Hematology
Marie Suarez, University of Illinois at Chicago. Richard Labotka, University of Illinois at Chicago. Robert Molokie, University of Illinois at Chicago. Patricia Hershberger, University of Illinois at Chicago. Bonnye Johnson, University of Illinois at Chicago.
National Center for Biotechnology Information , U. West J Nurs Res.
Author manuscript; available in PMC Mar 6. Author information Copyright and License information Disclaimer. Gallo, University of Illinois at Chicago;. The publisher's final edited version of this article is available at West J Nurs Res.
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See other articles in PMC that cite the published article. Abstract In the context of an inherited condition such as sickle cell disease SCD , it is critical to understand how people with SCD or carriers sickle cell trait [SCT] face the challenges of making informed reproductive health decisions. Table 1 Types of Sickle Cell Disease. Usually the most severe form of sickle cell disease.
This is usually a milder form of the disease. Sickle beta thalassemia disease: In these rarer types a person inherits one sickle cell gene from one parent and one abnormal hemoglobin gene from the other parent. Open in a separate window. Methods Sample Using purposive sampling, participants were recruited from patients with SCD attending an adult hematology specialty clinic for routine treatment, parents of children with SCD who attended a pediatric hematology specialty clinic for routine treatment, and people from the community who had SCT.
Table 2 Sample Questionnaire Items. How likely is it that you will accept the risk of having a child with sickle cell disease or trait? How likely is it that you will choose to not have children to avoid having a child with sickle cell disease or trait? How likely is it that you will choose to having testing in pregnancy like amniocentesis to determine if the fetus has sickle cell disease or trait?
How likely is it that you will choose to have test tube eggs or sperm that are free of sickle cell placed in your uterus womb to avoid sickle cell disease or trait? How likely is it that you will choose to use birth control to avoid sickle cell disease or trait? How likely is it that you will choose to have sterilization surgery tubes tied, vasectomy to avoid sickle cell disease or trait?
How likely is that you will choose to adopt a child to avoid having a child with sickle cell disease or trait? Analysis The analysis in this article addresses the beliefs, attitudes, and personal feelings of adults who were 36 years of age or older with SCD or SCT as they responded to the study questionnaire items only. Descriptive Themes Five descriptive themes emerged from the focus group interviews: Health related issues in sickle cell disease Despite recent improvements in treatments for SCD, many people in each focus group talked about the staggering health effects and complications of SCD in themselves, their children, or others.
As one participant with SCD shared, My mother had ten of us, two with the disease and one has the trait. Partner choice Within the context of learning early about their sickle cell status and sickle cell inheritance, participants understood and agreed that choosing a partner without disease or trait prevents children from being born with the disease. A woman with SCD noted, I was skeptical at first telling my future husband, but I know that I have frequent crises and it would freak him out.
One grandparent who had a granddaughter with SCD noted, Right now, my granddaughter is 15, and she is starting to accept it a little more. One participant with SCD was so resolute that her children with trait talked to their partners that she took it on herself to share this information, I made sure my children talked with whoever they were dating and let them know [they had the trait]. Reproductive options Women participants expressed a strong desire for having biological children even when a clear risk of having a child with the disease was present. One woman with SCT, whose husband did not know he had the trait before having children explained, If I had known that me and my husband had trait, we could have sat down and discussed it.
As one woman with SCD perceived, I think it would be hard on a pregnant mother, especially a mother that always wanted a baby. One woman with SCD who shared with the group that she had an abortion lamented on her experience and the difficult decision she made 18 years ago, With me it is hard, because I experienced [an abortion]. Discussion In general, most previous psychosocial research on SCD and SCT has been focused on the effects of the disease on people or issues of disclosing newborn screening results.
Contributor Information Agatha M. A pilot study to explore knowledge, attitudes and beliefs about sickle cell trait and disease. Journal of the National Medical Association. Unintended pregnancy among women having a live birth. The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major. Women with sickle cell trait: Journal of Reproductive Infant Psychology. Retrieved July, , from http: Decision-making and ante-natal screening for sickle cell and thalassaemia disorders: To what extent do faith and religious identity mediate choice?
Sexual experiences in men with sickle cell disease-a phenomenological enquiry.