Are you considering this question: "should people with AS Genotype Marry"? In this article, we explore the issues around forming significant relationships with people of AS genotype and their implications. No one can make these decisions for another - but having access to accurate information can help those who have to carefully think through and make the best choices for themselves and their families.
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"Should people with AS genotype Marry?"
Recently, a client asked us this really important question.
We think there are many people who struggle with this dilemma particularly in Africa.
This is because there are limited treatment options from poor health care access.
And the illness burden is severe.
Putting all the considerations together, we share our reply here for others who may have this on their mind as well.
Your genotype is a very important part of your health care status/profile, and one of those things that you should know because of the life-changing implications it carries.
What is Sickle Cell Disease?
People inherit Sickle Cell Disease (SCD) and it is present from birth.
The problem in this condition is that the red blood cells in the blood of a 'sickle cell warrior' have changed from the normal 'circular' or spherical shape to a sickle shape.
A child who has 'sickle cell anaemia' has received the sickle genes from BOTH parents.
In a relationship where both partners are AS genotype, it means that for every pregnancy they have together, there is a 25% chance that the child born of the pregnancy would have SS genetic combination i.e. a who will have sickle cell anaemia.
Other forms of sickle cell disease include the AS genotype, when just one sickle gene is inherited.
Or Haemoglobin S-C disease when the person inherits an abnormal S gene and abnormal C gene.
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Some Complications of having Sickle Cell Anaemia (SCA) / SS Genotype
People with the condition are prone to several health problems through life from childhood.
Some of them are:
- Episodes of severe pain in the bones and joints called 'crisis' that may happen because of cold weather, infection, dehydration, or exertion.
- Anaemia - people with SCD have low blood (haemoglobin) levels usually, but sometimes because of infection they can develop even lower blood levels.
- When they have anaemia, they become very pale, find it difficult to breathe, and very tired. This can affect their normal body functions.
- Infections - they easily develop infections like malaria or pneumonia etc. which can increase the risk of anaemia.
- Blocked blood vessels because of the abnormal sickle cells can cause a syndrome with pain in the chest, fever, breathing difficulties.
- This can also affect important organs of the body and their functions e.g leading to certain types of stroke.
So these are some of the problems that people with SCA suffer - FROM CHILDHOOD.
All of these problems could lead to death if not properly managed. People with sickle cell anaemia need VERY Prompt attention when they become ill.
Fast access to pain relief and oxygen is essential; they need injections and intravenous fluids to manage infections, they may need blood transfusions to quickly treat anaemia.
They need a lot of care and support, but with the right treatment in a timely fashion, they can thrive and lead fulfilled and happy lives.
The decision for 2 people to marry is left to themselves, but we will encourage that they think very hard about the issues, options and implications if they choose to do so when both of them are AS.
Considerations for AS relationships
1. These may centre around the financial and psychological support for the family having a child or children who are SS.
2. The two AS genotype partners can decide to marry and have no children. Or they may decide to marry, have no children and adopt children instead.
3. If they decide to marry and have a family together, they should realise that in each pregnancy, there is a 25% chance that the child that is born from the pregnancy will have the SS genetic combination i.e. having SCD, and can suffer from all of the above problems described.
(Some AS+ AS couples have 1 child with SS, and others have more than one child with SS.)
When an AS+AS couple becomes pregnant, they can have prenatal testing and counselling - this is a procedure carried out early in the pregnancy to determine whether the foetus has the SS gene.
It is not available in every country, and people who want to use this method should check if it is available to them.
The end goal is that if prenatal testing confirms the child will have SCD, a decision may be taken to end the pregnancy at that stage.
4. If they decide to keep the pregnancy, it is important to be aware of the child's health needs and how prepared they are to meet these needs.
(Remember we said 'the right treatment in a timely fashion'?). Well these are the KEY Questions you must ask yourselves:
Some Key Questions
*Are there hospitals close by that can manage the condition?
*Is there transportation to get the child to the hospital quickly?
*Do they know what needs to be avoided in children with SS to prevent the risk of developing some of the problems listed above?
*Are they aware of the emergency management and drugs that can be given at home (school) if problems arise?
*Is their home in an area/town/country where there is much support available for people with SS from childhood to adulthood.
Supporting a child with these needs has financial and psychological implications, and can have a huge impact on the mental well being of the entire family.
Some couples can handle this with help from friends and families; some may not.
These are some of the issues that surround the family with AS+AS parents and are worth considering when making the decision to marry.
Please feel free to contact us if you wish to clarify anything or need more information.
Or comment below if you want to tell us your view of the issue.
The important thing is to realise there are options and for people to decide with their partner which best suits them; and no one else can make this decision for the couple.
Editing by AskAwayHealth Team
All AskAwayHealth articles are written by practising Medical Practitioners on a wide range of health care conditions to provide evidence-based guidance and to help promote quality health care. The advice in our material is not meant to replace the management of your specific condition by a qualified health care practitioner.
To discuss your condition, please contact a health practitioner or reach us directly through firstname.lastname@example.org