Alex & Diana Klurfeld Discuss How to Help Your Child Cope with His Rare Condition

I had an opportunity to sit down with Diana and Alex Klurfeld of Klurfeld Cares to discuss issues facing children who mainstream medicine has left behind.  These children suffer from diseases that remain medical mysteries for the most part.  And according to Alex Klurfeld, “if your child has been diagnosed with a rare condition, you may have felt as though you’ve had the air knocked out of you.”  But remember that you’re not the only one whose world just came crashing down when you were given that news. When your 11-year-old heard the word “hemophilic,” he heard, “You can’t play as other kids do.” When your teenager listened to the effects of Ehlers-Danlos Syndrome, he heard, “Your aspirations to be an NFL Football Player have been ground to dust.” You have something much more important to consider than yourself, and it’s probably at the top of your mind—how do you help your child cope with his or her rare condition?

Maintain Normalcy

The first of five things to do to help your child cope is to maintain normalcy in your family and your child’s life. “They may have been diagnosed with a rare condition,’ says Diana Klurfeld, “but they need their life to continue the same as it has been as much as possible. Their world has just shifted. They will be having an array of new appointments; therapists and specialists are both possibilities. They may be needing new medical equipment in the future that they never thought they’d need. They’re probably concerned, if not anxious. Every child needs stability, and even a child who has found his world topsy-turvy due to a new diagnosis will find that the rest of their world won’t be turned upside down as well if there is some normalcy maintained in their life.”

The next part of maintaining normalcy is being careful not to treat your child any differently than you had before—especially if they’re above the age of nine or ten. Don’t act like they’re medically disabled, deficit, or changed in any way. Boys like to feel strong. Girls want to feel healthy. They are still the same girl or boy they were yesterday. Treat them the same. They only have a new diagnosis.  And many of these conditions share chronic pain and fatigue as a symptom that can make it difficult to know when to push them to do more and when to empathize. 

Yes, put the new precautions into effect, but don’t do it in a way that’s demeaning to their age. Make them a part of it. Let them help decide on how to implement the new precautions. This will make things go much smoother. Including them will also remind them that they are in control of their health and not just a “little (helpless) kid.” They have a condition that must be managed, and they must take part.

Be Open

In coping, your child will need to talk to someone. He may open up to a friend, a teacher, his grandma, or he may open up to you. Be ready! 

Be Open with Your Child

The best way to be ready is to be open with your child. Don’t feel like you have to avoid the elephant in the room. Don’t make your child’s rare condition an “elephant in the room” to begin with. If you make it something uncomfortable to talk about, your child will find it uncomfortable to talk about too. If he doesn’t find it uncomfortable to talk about and you do, your tendency to avoid it will make your child think you don’t want to talk about it, and he’ll avoid it for precisely that reason.

There are several activities that you can do that will help you to be open with your child. One method of opening up among families that is loved by many is gameplay. There are several well-liked games that will help children (and adults) of all ages to open up. One favorite is Mad Gab.

Be Open and Honest with Yourself

Also, be open and honest with yourself. What do you think about the situation? If you’re not completely honest with yourself, your child will be able to sense that. How are you coping? Are you coping? You must come to grips with your child’s diagnosis yourself.

One way to remain open with yourself is to journal. Journaling is a healing tool. When you find out that your child has a disorder or a rare disease, it’s normal to go through a grieving process. Journaling will help you in that process.

Be Open with Someone Else

If you are having difficulty accepting the diagnosis, be open with someone else about it so that you can cope. This way, you will better be able to help your child cope. You can speak to anyone who will listen—maybe a counselor, a friend, or your significant other. Whoever you talk to, just pour your heart out. Be open and honest. Tell them how you feel. Talking it out will help.

Promote Safe Activity

Depending on what it is, your child’s rare condition will make it necessary for him to avoid rough activities. Rather than merely telling him what he can’t do, tell him what he can do.

None of us like to be told what we can’t do. The rug has been ripped out from under your child’s feet. The things he used to enjoy may not be okay for him anymore. He may be struggling to find things that are okay to do. He’s probably severely missing those things, especially if those are things he did with his friends. Promoting safe activities that he can do to replace those that he’s missing will help. If they are activities that he can do as a group with his friends, that is so much the better!

Teach Them How to Manage Their Health

At a certain age, probably around eight or nine, your child must realize that he is responsible for his own health. What he does affects him physically. He’ll have to manage his health all his life. There’s no better time than the present for him to start learning how to do that correctly.

Teach Them How to Eat

Nutrition affects your child’s physical health. He must learn to be aware of which foods affect him and how they affect him physically, emotionally, and psychologically. Teach your child to chart his foods and his reactions so he can learn what affects him and how. This way, he’ll know.

If he’s old enough to participate in the process, work with your child on removing the things that affect him. By the way, if he’s over four, he’s old enough to be involved. This involvement will make him feel more in control and more mature. It will also make him more tolerant of the process. 

Once your child begins eating a diet that cuts out the foods that affect him negatively, he’ll notice a drastic improvement in his health. He’ll feel less pain, be more energetic, and be happier as a result.

Teach Them How to be Active

Activity is vital to a growing child anyway, but it means the world to a child with a rare condition. Not only does it help a newly diagnosed child cope, but it eases a myriad of symptoms that so many rare conditions throw at children. An active child with a rare condition has less pain, more energy, more stamina, less breathing difficulties, better blood pressure, a better heart rate, and so much more! Of course, your child’s doctor should be consulted about the acceptable level of activity first if their condition necessitates such treatment.

What to Do When His Rare Condition Interferes

Sometimes treatments for rare conditions make a child sick. This can interfere with school. Sometimes going to the treatment itself can interfere with school, after-school activities, sports, or playtime. Needles can hurt. MRIs are loud. Physical therapy isn’t fun, and most specialist appointments are boring. The specialist knows that as much as your child does. You must teach your child what to do when his rare condition interferes.

When he gets sick or disappointed, teach him that it’s okay to be sad. It’s okay to cry. Tears are entirely acceptable. Teach him that there is a time, though, to dry those up and move on. Life moves on with or without you—preferably with you.

Teach Your Child to See the Good in Life

The last way to help your child to cope with his rare condition is to teach him to see the good in his life. Teach him that there is a silver lining to every cloud, if you will.

What is the good in his having a rare condition? Well, it means he gets to spend more time with his mommy or dad as he drives to appointments, of course!

What’s the good in his symptoms? He’s learning patience, character, and self-control. These are qualities that all good men and women possess. They are things many people may not have the opportunity to curate in their life.

What is the good of being in a wheelchair? He gets to strengthen his arm muscles like no one’s business! He has the strongest arms of any kid on the block and can beat any kid around in an arm-wrestling match!

Diana explains that “being able to see the good in life is a characteristic that few possess, and even fewer know choose to employ. If your child can learn how to hone this skill and choose to use it, he will be on the road to success in life for sure, and coping will be a simple feat for him.”

So how do you teach your child to see the good in life? “One way is to institute a time of thankfulness before each evening meal,” says Alex Klurfeld.  “Many people do this to a small degree already. The way that works best for teaching a child to see the silver lining is different from what the average family practices, though it could be added to what they already do.”

Before the evening meal, go around the table, and have everyone tell one thing that they were thankful for from that day. It may have been a person, an item, or a feeling. It may have been as simple as someone smiling at them or as big as the memory that they are loved. This simple tradition will help your child begin to think in the form of blessings rather than burdens.

Conclusion

At the end of the day, you are your child's support system. When your child is diagnosed with a rare condition, doing these five things will help him cope. Maintain the regular schedule and routine and treat him normally. Be open with your child, yourself, and others. Promote safe activity by telling him what he can do rather than telling him what he can’t do. Teach him how to manage his health by teaching him how to eat, how to be active, and what to do when his condition interferes. Lastly, teach him to see the good in his life. These things will help your child cope with his rare condition.  Neither myself nor Alex or Diana Klurfeld are doctors, although Alex is a physical therapist by training, and you should consult a doctor before following any of the advice in this article.   Alex and Diana are fortunate to have healthy children and have only come across this issue through their professional careers in the medical space.  Their new volunteer organization Klurfeld Cares is penning articles on the subject of rare diseases and looking to acquire more information and stories from others who are willing to share it.   If you have helpful information or just a comforting story to share, please submit it to Diana Klurfeld at her website, above.