06 October 2014

5 Tips For Living With Cystinosis

I've been wanting to write a post like this for quite some time. The cystinosis community is small, albeit mighty. I'm endlessly grateful for the ways people in our little family support each other. Insecurity kept getting in the way of me publishing this piece, because I definitely don't have it all figured out. I finally decided to go for it though. I've been living with cystinosis for 31 years now and I've learned a few things along the way. Obviously, I am not a doctor but these are some points I believe can help. I'm excited to share them today! (Nerves be done. Ha.) Really, these tips can easily transform to other chronic diseases and health adventures, but I wanted to focus on cystinosis today because resources can be tricky to find due to the rarity of the condition.

1. Remember your journey is yours and your alone.
It doesn't matter where you are in your journey with cystinosis, or who you are. If you are a parent, or a friend, or the person living with it each day, always remember the details of the story are unique to everyone. I think sometimes people can get really caught up in comparing when a disease is so rare like this one. It truly is crucial to walk your own path. Whatever that may mean to you and your circumstances.

2. Trust your gut instincts.
Confession: there have been many times when I've rebelled and not listened to what was recommended. I'm still here to talk about it! An example would be growth hormone injections to assist my body in the growing process. They are quite popular with many people and their cystinosis stories. Personally, I felt confident in my decision to skip them when they were offered to me by my nephrologist. It was a tough health time in my life and I had other priorities. In addition, there was that little gut instinct that I couldn't shake off. I don't mind being 4'11" now either. Wink. As often is the case, we have to choose our battles. I love that we have choices like this.

3. Embrace normalcy.
This is huge. I've never particularly been fond of the word normal anyhow, because I don't believe anyone knows what that is! The oven timer goes off multiple times a day around here to remind me to do my eyedrops. Sookie is used to it. We all are. It is our normal. This is a miniature example. Really though, create your life the way you were going to anyway. Sure you have to shift some things and make room for extra obstacles, but find your version of normal. Then rock it out of the park and create your wonderful life from the ground up. It is possible.

4. Do your own research.
As I covered before, many practices seem like a go to in the cystinosis world. However, I really encourage people to do their own research. Simply because a certain intervention works wonderfully for one person, doesn't immediately mean it is for you. You have to take into account your whole picture, not the one facet of cystinosis. And my goodness, listen to your body. You know it better than anyone else.

5. Ginger root is an incredible natural aid for nausea.
When I became a mom, I took a step back from my medications and made adjustments to natural alternatives. I completely understand this isn't always feasible, but you may be surprised where it is indeed possible. Nausea is a common side effect of cysteamine and at times it can be absolutely brutal, depending on how your body tolerates the medication. I've been off of all acid reducers for over 5 years now and it is such a relief. I started researching the long term side effects of these drugs and it was some  eye opening information. I take organic ginger root capsules with every dose of cystagon. You can purchase them from Amazon as well as any health food store.


  1. نتحدث اليوم في تلك المقالة عن الخدمات المنزلية التي تقدمها لكم شركة الطيب فسوف نبدأ بخدمات التنظيف فان شركة الطيب افضل شركة تنظيف بالاحساء نعتبر الشركة الاولي في خدمة النظافة العامة بالاحساء الا اننا نقوم بتنظيف المنازل و ايضا الخزانات فنحن الشركة الاولي في عالم التنظيف كما اننا نعتبر افضل شركة تنظيف بسيهات ان سكان سيهات يحتاجون الي شركة متميزة و بارعة مثل شركة الطيب لاننا نقوم بتنظيف اي شئ مستحيل تنظيفة الا اننا نقدم لكم خدمة القضاء علي الحشرات فنحن افضل شركة مكافحة حشرات بسيهات ليست خدمة التنظيف و حدها با رعين فيها بل ايضا نقوم بخدمة اخري و تعتبر مجموعة الطيب هي الناجحة بالمملكة العربية السعودية و ايضا وان من الضروري تنظيف الخزانات فنحن نظافة خزانات شمال الرياض و نقدم لكم ايضا و ايضا من المهم الاهتمام بالمظهر فشركة الطيب نقوم بمكافحة الحشرات بافضل
    شركة تنظيف كنب بالرياض
    انواع المبيدات ا و ايضا نقدم لكم و اخيرا و شكرا لكم جميعا