How unique are you? Rare Disease Day

This one goes for one of the goals set towards my race: raising awareness to Perthes disease, and to the wonderful work of the PERTHES KIDS FOUNDATION. When I was 8 years old I was diagnosed with Legg-Calve-Perthes disease, a degenerative hip bone disorder (a rare form of osteonecrosis or avascular necrosis), that makes it painful to walk, run, and play like most kids. So over 40 years since the Dr said I am done with it, I feel fortunate to be able to function like anyone else, and most of all enjoy hours of trail running each week.

Most people will say; “I have never seen anyone with LCPD, or met one”. Well, this is the thing: unlike many other disease, LCPD is not visible, unless you meet a child in the midst of the active state of it. So below are some facts about LCPD, and one photo from my runs – I feel blessed I can – with love to all LCPD kids and their families.

So, to our educational piece, here are some facts about LCPD:

Legg-Calve-Perthes disease (LCPD) usually occurs in children aged 4-10 years (mean age, 7 years). It occurs more commonly in boys than in girls (male-to-female ratio, 4:1). The condition is rare, occurring in approximately 4 of 100,000 children.

It is not curable because we don’t know the cause. However, it is a self-healing disease, meaning the body is able to heal the bone in the femoral head that is affected. The healing process and the duration of the disease vary from patient to patient. Signs and symptoms of Legg-Calve-Perthes disease include: Limping; Pain or stiffness in the hip, groin, thigh or knee; and/or limited range of motion of the hip joint. Below is a scheme of “what and where” & a photo of a girl with the kind of brace I had to put on for ~3 years.

Legg-Calve-Perthes can be treated without surgery, or with surgery, depending on the child’s particular case and severity. If non-surgical treatments prove inadequate, your child may need surgery to hold the head of the thigh bone in the hip socket (containment). Surgery involves reorienting the affected bones (osteotomy) and stabilizing the realignment with screws and plates.

Recovery also takes a long time – rarely less than 18 months, and sometimes longer than two years. This may seem an unbearably long time, but if considered as a part of a whole lifetime, it is worth some sacrifice of time and effort if it achieves a useful, instead of a permanently damaged, hip joint for your child.

Do not forget to support: PERTHES KIDS FOUNDATION & Yadid Lachinuch Eng. / עברית

logo-rare-disease-day

50003243_10214153795344898_7901429863909687296_n

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s