“Hi, I’m Jenny. I’m 32 years old and I have cystic fibrosis. That, by very definition, makes me rare because there are only about 30,000 of us in the US and about 70,000 worldwide who have CF. That’s not a lot of people!
My family is rare in that 3 out of my parent’s 5 children were born with CF. As I’m sure you know, the chances of two carriers having a child with CF are 1 in 4. My parents just went above and beyond and there’s 3 of us!
I’m also rare in that CF has presented a lot of challenges, trials, heartache and loss in my life. I’ve chosen to take each of those experiences and turn them into something positive. I use those things to fuel my fire and to continue spreading hope, love, and positivity, and to keep fighting and keep advocating.
I think that being rare and facing these challenges gives us the unique opportunity to do that. I believe that connecting and sharing our stories is really empowering, and I really want to know….
𝗪𝐡𝐚𝐭 𝐦𝐚𝐤𝐞𝐬 𝐘𝐎𝐔 𝐫𝐚𝐫𝐞?”
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CF News Today is celebrating Rare Disease Day all month long! You can participate in the #WHATMAKESMERARECF challenge by sharing a video or written submission. For more details, head over to @cfnewstoday 💜
#whatmakesmerarecf | #raredisease | #rarediseaseday | #iamrare | #cysticfibrosis | #chronicillness | #invisibleillness | #whatmakesyourare | #cfnewstoday | #lungsnrosesblog
𝐑𝐄𝐀𝐋 𝐓𝐀𝐋𝐊 𝐓𝐔𝐄𝐒𝐃𝐀𝐘: 𝐇𝐀𝐈𝐑 𝐋𝐎𝐒𝐒
In 2016, several weeks after a hospitalization, I began losing my hair. I’ve always been a shedder, but this was unlike anything I had ever experienced!
I’d lose handfuls of hair at a time, especially while showering. I remember looking at a sink full of hair one day and crying because I was certain I was going bald.
After a series of tests and doctors visits, I was eventually diagnosed with telogen effluvium – a temporary hair loss condition.
Telogen effluvium can be caused by any major stress to the body – surgery, severe sickness, extreme weight loss, and even psychological trauma.
Other common causes of hair loss include: hormone changes, thyroid issues, vitamin deficiencies, environmental factors and medications. One study found that 50% of women with CF who reported hair loss were on Orkambi and 20% were on Symdeko. (More info in comments.)
In short, there are a ton of potential causes of hair loss and therefore, many possible solutions! And sometimes, the only solution is to wait it out. Ugh.
Since my experience in 2016, I’ve experienced significant hair loss after every surgery and/or hospitalization. I was admitted for a CF exacerbation in November and, right on schedule, I’m currently in a hair loss phase (telogen effluvium usually happens 2-3 months after the triggering event).
In the past, I’ve used hair re-growth shampoos, supplements, and hair fill-in powders to help conceal especially thin spots. But I don’t really do anything now.
I know that for me, this is temporary. I won’t go bald and my hair will grow back eventually! It’s not a fun thing, but I’ve (mostly) come to terms with it.
Have you experienced hair loss? Were you able to determine the cause? Do you have any tips for someone currently experiencing hair loss?
#realtalktuesday | #hairloss | #cysticfibrosis | #womenwithcf | #chronicillness | #telogeneffluvium | #lungsnrosesblog | #yourenotalone | #letstalk
