Sickle cell disease: Ways to help teens and parents


Adolescence is a difficult time for everybody. However for teenagers with sickle cell illness and their mother and father, it may be significantly difficult.

Sickle cell illness (SCD) is a genetic illness by which the hemoglobin in pink blood cells is made in another way. Due to this distinction, the pink cells usually tackle the form of the farm instrument referred to as a sickle. Not solely do these sickle cells break down extra simply, resulting in anemia, however they’ll clog up small blood vessels, resulting in ache and to organ harm.

Most instances of sickle cell illness are identified within the new child interval, with new child screening, as I famous on this weblog publish. Kids with sickle cell illness are at greater threat for a lot of well being issues, together with anemia, ache, an infection, respiratory issues, and a harmful swelling of the spleen. However as is the case with many persistent illnesses, the issues of sickle cell illness get extra difficult and critical as youngsters develop into adults. Their threat of well being issues reminiscent of infections, kidney issues, blood clots, and stroke will increase as they enter maturity.

That’s why it’s understandably scary for teenagers with sickle cell illness and their mother and father. For each teenagers and their mother and father, it’s onerous to consider them taking up a critical illness on their very own. However the job of a teen is to study to care for themselves — and the job of a guardian is to help them in doing simply that.

How can mother and father assist teenagers dwelling with SCD?

Listed here are some issues you are able to do:

Train your little one about sickle cell illness. When mother and father do all of the care and speaking to medical doctors, youngsters don’t all the time perceive all the things that is occurring. There are various nice sources for teenagers to study their illness, together with from the Facilities for Illness Management and Prevention (CDC) and MedlinePlus. Your little one’s main care physician or hematologist (blood issues specialist) might know of others, as properly. That is one thing you need to begin as early as elementary college, however ought to definitely be doing in earnest by center college and highschool. Together with understanding about their illness and the attainable issues (and signs of these issues), they need to know their medicines and doses.

Let your little one do the speaking at physician’s visits. It’s widespread for folks to do the speaking, however by center college, let your little one reply the physician’s questions, and encourage them to ask their very own as properly. You possibly can all the time fill in something they omit!

By highschool, give your teen time alone with their physician. You possibly can examine in originally or finish, however it’s essential that they not solely study to do it on their very own, however that they’ve time to ask questions they could not really feel comfy asking in entrance of you.

Speak about — and mannequin — wholesome dwelling. Teenagers with sickle cell illness have to eat a nutritious diet, get train, drink loads of fluids, get sufficient sleep, and make protected selections about alcohol and different substance use. You possibly can help them on this by making these habits a part of every day household life.

Have frank conversations about how teen actions can carry risks for teenagers with sickle cell illness. Even only a day on the seaside, a ski journey, or a recreation of soccer — not to mention drug and alcohol use or intercourse — could be problematic for folks with sickle cell illness. Have open conversations and give you methods collectively. Your physician can assist. Talking of intercourse…

Sex and sexuality could be difficult for folks with sickle cell illness — so you want to speak about it. Sexual dysfunction, extended erections, or ache throughout intercourse are widespread. And hydroxyurea, a medicine generally used to deal with sickle cell illness, can result in beginning defects. Speaking about intercourse and contraception can really feel uncomfortable, however it’s essential to do by highschool. Your physician can assist with this, too.

Work collectively to provide them independence. It’s regular to wish to preserve a teen with a persistent illness shut, and restrict their independence. However in addition to the truth that it’s our job as mother and father to show our teenagers to be impartial, it’s much better that the inevitable errors and issues occur when they’re beneath your roof than once they aren’t.

Plan forward to make certain your teen all the time has a powerful medical crew. Any time your teen goes to be away from house, whether or not it’s for a tenting journey or faculty, they should know easy methods to get medical consideration and the place. Having a MedicAlert bracelet could also be a good suggestion. These CDC tip sheets for dwelling properly with SCD might assist, too. And as teenagers enter maturity, they might want to transition from pediatric to grownup medication, which would require some superior planning and dialogue together with your medical doctors in order that the transition is easy.

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