Mitochondrial Disease Awareness Week 2019

Kerissa • September 16, 2019

* I shared this on Facebook and Instagram but wanted to post it on my blog as well since some of you here aren’t on social media.*

I originally had the background of this in blue, but then I remembered that today starts Mitochondrial Disease Awareness Week 2019!   So I of course had to change it to green.   You know how diseases have a specific color/ribbon (gold is for childhood cancer, etc.)?   Well, green is for mito.

To bring more awareness, I just wanted to share a little about how Mitochondrial DNA Depletion Syndrome affects me which is the specific mitochondrial disorder that I have (there are many types).

Because my mitochondrial DNA is getting depleted over time (mitochondria are the organelles that make energy for all the organs and cells to function properly), I have to sleep over 15 hours every day which has always been so hard, especially in the winter—I wake up when it starts getting dark and go to bed when it’s dark so I don’t get to see much daylight at all.   When I don’t get enough sleep, all my symptoms get worse, especially the pain.

Speaking of pain, I get headaches everyday, have small fiber polyneuropathy in my hands and feet (which causes terrible burning, aching pain), experience abdominal pain when the GI dysmotility is even worse than usual, neck pain because of the hypertrophic arthropathy that I have due to the congenital vertebral fusion I was born with, and also pain on the bottom of my right foot due to the vascular malformation I was also born with that grew back this year (even though it was removed in 2010).   I have to tip-toe on my right foot because the mass hurts so much.   I’ve had more than 18 surgeries and have another foot surgery coming up to remove the mass once again.   I’m on really strong pain meds, but even those don’t take it all away..

I’ve had sepsis 3 times (2016, 2017, and 2019) and septic shock once (2018).

I have a j-tube in my abdomen to flush medications through because big pills get stuck in my esophagus caused by esophageal dysmotility/weak peristalsis.   I also have a central line in my chest for IV nutrition and IV magnesium for renal magnesium wasting.

I have muscle weakness and fatigue so I have to use a wheel chair for long distances.   I have numerous eye disorders caused by mito—ptosis (drooping of the eyelids, especially when I’m really tired), external ophthalmoplegia (paralysis of certain eye muscles), and nystagmus (involuntarily “shaking” of the eyes).

I also have a mast cell disease, POTS, EDS, and Wilson’s Disease (my doctors say I’m so rare).

I have centrally-mediated vertigo and also complex sleep apnea (both central and obstructive).   I have to use an adaptive-servo ventilator at night because without it, I only breath on my own 40% of the time.

I’ve left out many other medical things, but you get the gist..

As you can see, having mito has been extremely life changing and more difficult than words can explain, but I want you to know that I really and truly could not do this without Jesus.   These beautiful lyrics are by @elevationworship, and when I call on Jesus, He is there for me.   He helps me.   He restores my soul.   He gives me purpose in all of this pain.

P.S. If you made it this far, this month also marks 2 years since I started learning how to hand letter!! ☺  It’s been one of the best decisions ever, and I’m so glad I took Becca’s amazing online courses (@thehappyevercrafter on Instagram).  Lettering has been so therapeutic to me while I’ve been on this journey.

New Struggles

By Kerissa Lee • April 30, 2025
"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world." -John 16:33- 

More difficult news..

By Kerissa Lee • April 9, 2025
Dear friends, I’d really appreciate your continued prayers. 🥺 Thank you for being on this journey with me through the good and bad. ❤️ Last year, I had a sleep study where I shared that I was diagnosed with moderate Central Sleep-Disordered Breathing (central apnea happens when the brain doesn’t tell your body to initiate breaths). It was noted that I stopped breathing about 17 times per hour. Well, my neurologist wanted me to get yet another sleep study last month to make sure this neck weakness hasn’t caused worsening apnea. And I’m sad to share that the results were much worse than last year’s. :( I thought last year was bad, but this latest study shows that I stopped breathing more than 40 times per hour (almost 400 times total through the whole night). 🥺 This was hard to hear and also such a reminder that God is the one who gives us “the breath of life” (Genesis 2:7) every minute. It’s by his mercy that we wake up to each new day. ☀️ What makes my case complex is that my esophageal sphincter has been affected by the mitochondrial disorder—it’s weak, so when air from a sleep machine is pushed down into my lungs, bad throat gurgling happens which keeps me up at night because my esophageal sphincter can’t close all the way like it should. :( My appointment with the rheumatologist was yesterday, and I wish I could say she gave a concrete diagnosis of what’s been happening these last several months…but that wasn’t the case. 🥺 I have to get more specific labs done. She also ordered x-rays of my hands and feet to check for possible spots of rheumatoid arthritis or calcinosis. The doctor said sometimes a new condition happens gradually, and it’s a wait-and-see type of situation. 😥 If these additional tests and labs still don’t give a clear cut answer, I’m so glad I have a second opinion with another rheumatologist at the end of June. This one sounds especially good because he’s a DO (doctor of osteopathic medicine) and offers a whole-body approach regarding treatment. Could you please pray something can be done soon as my quality of life continues to be rough, and these latest symptoms have been going on for half a year now. :’( Hard to believe October was 6 months ago! All this time, I’ve just been waiting.. I did ask my PCP at one of my appointments if he ever orders treatment for something even without a definite diagnosis, and he said “yes” which was encouraging to hear. His family leave is almost over, so I see him again soon. Just finished a virtual follow-up with another one of my amazing doctors this afternoon. 💜 She knows a very specialized neurologist in Washington who has his own private practice. She wants me to see him and hopes he’ll be able to connect all the dots and see the bigger picture. So blessed by all of my many doctors who try their best to help me! 🥲 I started the process in applying to the Undiagnosed Diseases program through Harvard (it got pretty delayed because of my 2 mitochondrial crashes in November and December). My application has been assigned to the Seattle clinical site. Please pray that the doctors who review my case will be able to accept me as a patient and find the genetic defect causing my mitochondrial depletion. The UDN acceptance rate is about 40%.. I saw this quote recently by Martin Luther and just had to hand letter it (so thankful for one of my neurologists who increased the anti-seizure medication which has been helping to decrease my hand tremors). ❤️ This statement by Martin Luther is such a beautiful reminder. All that’s happened lately has been the hardest trial, but I’m praying that I will persevere and bear this cross daily to bring honor to the Lord. I know my life is in his loving hands. I’m thankful for God’s promises in Romans 8:28–“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” ✨

February update ❤️

By Kerissa Lee • February 27, 2025
Hi, friends, I went to see my neuromuscular neurologist in Seattle last month, and since there are no neuromuscular specialists here in Oregon willing to see me, he kindly placed a referral for me to see a neurologist he trained who practices in Vancouver, WA! That appointment was originally scheduled for late April, but this new doctor moved it way up, and I was able to see him at the end of January! 😊 I’m so grateful for him, and he seems knowledgeable about mito. He told us that I “am easily the most complex patient he has ever seen.” 😥 I had to get a very painful test completed called an EMG (electromygraphy). It involves having big needles (larger/thicker than acupuncture needles) placed and pushed repeatedly into my neck and shoulder muscles. 😢 Hurt so bad!! I’ve had this done more than once on both legs, but it was much more painful on the neck! He wanted this test to check for active myositis since my MRI was inconclusive. Well, the results show that this progressive neck weakness is due to mitochondrial disease progression, and not from myositis. Whenever I have a “mito crash,” I’m usually able to slowly bounce back afterwards with time. But since I’m not recovering, he explained there’s degeneration going on and that my mitochondria are dying. That was hard to hear. 😢 We may have an idea why my condition is worsening quickly.. I received results from an extensive autoimmune panel which shows that 2 labs came back abnormal for a potential lupus diagnosis. We’re not positive I have it as I need more tests done, but my neurologist said that could definitely be what’s causing this mito progression. I have to see rheumatology now, but unfortunately, OHSU denied to see me. In my previous post, I mentioned that my pain doctor referred me to palliative care. Well, they, too, turned me down…. It’s just hard to fathom that multiple specialties at THE top hospital in Oregon won’t see me because I’m too complex…it’s so isolating and lonely. 🥺 Since my PCP has a new baby girl and is out on leave for 2 months again, I’m so grateful for my GI specialist’s help—it was kind of him to place a referral for me to see a rheumatologist at Providence. That appointment is in April. Please pray my whole medical team will be able to find out the cause of why I have harmful antibodies in my blood. It has now been 4 1/2 months since this all started. Time seems to crawl, yet at the same time, pass by quickly. My mitochondrial symptoms continue to worsen. For example, if I have a virtual visit with one of my doctors, just lying in my recliner and talking to them for 20 minutes causes horrible nystagmus afterwords. 😭 If it’s true there’s something autoimmune going on like lupus, it’s using up all the limited energy I have.. 😔 Could you also pray that the mitochondrial disease progression will slow down? I wanted to share an answer to prayer—you may recall I posted last month that my Seattle neurologist sent a new referral for me to see my mitochondrial specialist in San Diego as it’s been 4 years since I last saw him. Well, even though he’s semi-retired, I’m so happy to say that he accepted me which is a blessing from God! Isn’t that so wonderful? 🥹 He’s booked out ‘til September! But I’m not physically well enough to see him now anyways, so we’re praying my health will show some improvement 7+ months from now and I can travel then.. The Lord recently led me to The Tapestry poem written by Corrie Ten Boom. If you aren’t familiar with her, she was a faithful Christian during World War 2 who survived Auschwitz and the holocaust! You may have read this poem before, but knowing her testimony and how she had to go through extremely hard trials makes The Tapestry even more meaningful/impactful. ❤️ She is an example to me, and I hope this is an encouragement to you as well: “My life is but a weaving Between my God and me. I cannot choose the colors He weaveth steadily. Oft’ times He weaveth sorrow; And I in foolish pride Forget He sees the upper And I the underside. Not ‘til the loom is silent And the shuttles cease to fly Will God unroll the canvas And reveal the reason why. The dark threads are as needful In the weaver’s skillful hand As the threads of gold and silver In the pattern He has planned. He knows, He loves, He cares; Nothing this truth can dim. He gives the very best to those Who leave the choice to Him.” -Corrie Ten Boom