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 dad and mom, it may be significantly difficult.

Sickle cell illness (SCD) is a genetic illness during which the hemoglobin in purple blood cells is made in a different way. Due to this distinction, the purple cells usually tackle the form of the farm software 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 recognized within the new child interval, with new child screening, as I famous on this weblog submit. Youngsters with sickle cell illness are at increased 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 continual ailments, the issues of sickle cell illness get extra difficult and critical as youngsters develop into adults. Their threat of well being issues akin to 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 dad and mom. For each teenagers and their dad and mom, it’s exhausting to consider them taking up a critical illness on their very own. However the job of a teen is to study to handle themselves — and the job of a mother or father is to assist them in doing simply that.

How can dad and mom assist teenagers dwelling with SCD?

Listed below are some issues you are able to do:

Train your youngster about sickle cell illness. When dad and mom do all of the care and speaking to medical doctors, children don’t at all times perceive every little thing that is occurring. There are a lot of nice assets for teenagers to study their illness, together with from the Facilities for Illness Management and Prevention (CDC) and MedlinePlus. Your youngster’s main care physician or hematologist (blood issues specialist) might know of others, as nicely. That is one thing it’s best to begin as early as elementary college, however ought to actually be doing in earnest by center college and highschool. Together with realizing about their illness and the potential issues (and signs of these issues), they need to know their medicines and doses.

Let your youngster do the speaking at physician’s visits. It’s widespread for fogeys to do the speaking, however by center college, let your youngster reply the physician’s questions, and encourage them to ask their very own as nicely. You possibly can at all times fill in something they pass over!

By highschool, give your teen time alone with their physician. You possibly can test in at the start or finish, nevertheless it’s necessary 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 secure choices about alcohol and different substance use. You possibly can assist 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 seashore, 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 provide you with methods collectively. Your physician may also help. Talking of intercourse…

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

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

Plan forward to make sure your teen at all times has a robust medical workforce. Any time your teen goes to be away from residence, whether or not it’s for a tenting journey or faculty, they should know the best way to get medical consideration and the place. Having a MedicAlert bracelet could also be a good suggestion. These CDC tip sheets for dwelling nicely 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 along with your medical doctors in order that the transition is easy.

Comply with me on Twitter @drClaire

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