Mitochondrial Disease Awareness Week ~ September 18-24, 2016

Kerissa • September 22, 2016

Hey guys,

This week is Mitochondrial Disease Awareness 2016!

I just thought I’d go right in and share a little bit about mito in this post and how it affects so much of the body.

I have a mitochondrial depletion disorder which basically means I have less mitochondria than the normal person. My depletion is very significant. You might ask, What are mitochondria? In simple terms, mitochondria are the energy powerhouses in every cell (except red blood cells) that make ATP. Every organ in the body needs energy to function. Without enough energy (ATP), numerous medical problems result. Because of my mitochondrial disease, all of this happens:

-Severe fatigue (I sleep 16-18 hours every day)

-Chronic neuropathic pain

-Use of a BiPAP machine due to sleep apnea

-Myoclonus (muscle jerks day and night)

-Nystagmus/oscillopsia (my eyes oscillate which feels like an earthquake in my head)

-Hyper reflexes due to a problem in my spinal cord

-Generalized slowing on EEG

-Headaches

-Myogenic bilateral ptosis (drooping eyelids)

-Left eye ophthalmoplegia (“paralyzed” eye muscles)

-Hypotonia (low muscle tone)

-Muscle weakness

-Exercise intolerance

-Hypoglycemia (low blood sugars)

-Dysautonomia

-Low blood pressure which causes high heart rate and lightheadedness

-Esophageal dysmotility

-Gastroparesis/intestinal dysmotility

-Nausea/vomiting

-Abdominal pain and distention

-Chronic constipation

-Failure to thrive

-IV nutrition every night through a central line in my chest

-A jejunostomy feeding tube in my abdomen

-Daily IV magnesium with potassium for hypomagnesemia (chronically low blood Mg levels from renal magnesium wasting)

-Hives/itching due to mast cell hyperactivity

-Tinnitus (ringing in ears) with partial hearing loss that comes and goes

-Anemia

-Neurogenic bladder

-Tremor (especially noticeable with daily activities that require fine motor skills)

Because of mito, I have more than 20 different specialists who care for me:

Neurology
Gastroenterology
Internal Medicine
Pain Medicine
ENT
Neuro-urology
Orthopedic Surgery
Physical Medicine/Sports Medicine
General Surgery
Hematology
Neuro-ophthalmology
Allergy/Immunology
Physical therapy
Mitochondrial Medicine
Sleep Medicine
Pulmonary Medicine
Cardiology
Hepatology
Nephrology
Podiatry
Palliative Care
Naturopathic Medicine

It can get overwhelming to have so many symptoms and so many doctors.

But as you read all this, please don’t feel sorry for me.. Rather, I’d like you to be aware of this disease and how it dramatically affects a life.

Just “some” of the mitochondrial diseases that are out there…!

This journey has been extremely difficult, challenging, eye-opening, discouraging….. And at times, I wonder how much more my body can take. I can’t go to college and pursue a career like other young people my age. At this point, I can’t “work” because I have 2-6 doctor appointments every. single. week. I often wish I could do “normal” things like other “normal” people.

But I also am filled with joy that I can share in Christ’s sufferings (1 Peter 4:12-13). And I remember that the Lord has chosen this path for me. I may not know the reason why in this life on earth, but I know that He is good, and I trust Him (Romans 8:28).

I can’t remember if I posted this before, but one of my close friends shared this beautiful quote with me—it sums up everything perfectly:

“Perhaps there is also something in your life causing you to question God. Do you find yourself saying, ‘I do not understand why God allowed my loved one to be taken. I do not understand why affliction has been permitted to strike me. I do not understand why the Lord has led me down these twisting paths. I do not understand why my own plans, which seemed so good, have been so disappointing. I do not understand why the blessings I so desperately need are so long in coming.’

Dear friend, you do not have to understand all God’s ways of dealing with you. He does not expect you to understand them. You do not expect your children to understand everything you do—you simply want them to trust you. And someday you too will see the glory of God in the things you do not understand .” ~J. H. M.

This awareness week is halfway over, but every blog post I write, I want to continue bringing awareness to this progressive and terrible disease. So many babies, children, and adults suffer with mito, and I know there are many medical professionals and people who haven’t even heard of mito! Before this journey started, I never even knew there was a disease like this where you can look so normal on the outside but have so much wrong on the inside..

P.S. I mentioned in my last post how I started experiencing an atypical headache. Well, it’s still not gone and is going on 3 1/2 weeks now. On top of that, my eyes have been oscillating (nystagmus) for more than 2 weeks, and it has never lasted that long! I get ever so nauseated each day from all of this and feel so unwell. Something’s just not right, so I’m in close touch with neuro-ophthalmology, primary care, neurology, and pain medicine. I have to get a brain MRI on Friday which will be my 20th MRI scan… My doctors are trying to figure out if this is related to my mitochondrial disease or something new.

P.P.S. I found out that my muscle biopsy tests through Baylor haven’t even been started yet. They’re still waiting on insurance authorization. Waiting is so hard!

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Surgery Update 😊

By Kerissa Lee • August 21, 2026

Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! 💚 All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! 🥹 My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! 🥰 I can’t wait until I can show you his face—he’s so adorable. 🩵 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it..

August 6th Surgery Prayer Requests 💚

By Kerissa Lee • August 6, 2026

"God is our refuge and strength, a very present help in trouble." -Psalm 46:1

Another surgery 😞

By Kerissa Lee • July 25, 2026

Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul