What the HHT?

A Voice for the HHT Community

But You Look So Good!


By Janice Jones

However, looks can be deceiving…

janice-jones-2I, unfortunately, missed a blog entry last month and the opportunity to share with my HHT family. This was due to my inability to function at a normal level. The intravenous treatments I was receiving were abruptly changed in January of this year and I have been on a large dose of oral iron medication that isn’t as the successful as the IV therapy.

Due to the many stressors of daily life, and some unforeseen incidents that caused me much physical drain, my blood levels depleted even more and I became extremely ill and was in bed for about four weeks.

I could only partake in small amounts of activity for about 15 to 30 minutes, and then would have to lay down for several hours. I had a great deal of pain in my muscles, bones and joints, and breathing was difficult.

My hemoglobin was at an 8.7 level at the beginning of October. I’m still taking the oral medication, but may have to start iron infusions again if things don’t improve. This has truly been the worst I have felt since being diagnosed with HHT. These complications have led me to take some time off from my graduate studies and delay returning to work.


The individual symptoms are often the most difficult for HHT patients. Though you may not look sick to others, your body can be struggling. Click the image above for the full fact sheet.

Interesting enough, I have always received comments that I don’t look like there is anything wrong with me. But as stated in the subtitle of this blog, “looks can be deceiving” is truly my motto. With this disorder, I face exhaustion; not being able to focus for long periods of time; not retaining moisture in my skin or a normal body temperature; inability to sleep throughout the night; and the retaining of fluid in my lower legs and feet are a constant.

Every individual is different, and these are some of the issues I face as it relates to HHT. More so, because I’m still not operating at a 100 percent, I’m actually forced not to spend much time writing about my current circumstances at this present moment. But I did want to share my experiences with everyone this month and shed more light on what this particular individual who deals with HHT tends to face.

As always, my faith in Christ keeps and sustains me and I’m always thankful and grateful to see and experience another day as I face and fight this HHT giant. I hope I’m able to encourage others to stand firm and remain strong in hope as we battle together.

4 thoughts on “But You Look So Good!

  1. Hello Janice Jones, I’m So Incredibly Proud Of Your Blog, And Many Accomplishments. Thanks For Making Everyone Aware Of HHT. Good Job. I Pray For Continued Success❤️👍🏾😉👏🏾🙏🏾


  2. Thank you for sharing your courageous fight with HHT. Stay strong😀


  3. Oh you are so right!!!!! I not only have HHT but Fibromyalgia and suffer tremendous chronic pain from a failed back fusion. I get that all the time and the worst part is my own family doesn’t understand. You should see the stating I get when I actually use my handicapped placard which I don’t use often. Thanks for sharing and teaching people.


  4. You rock! Thanks for sharing. Your words and His love can carry many through this journey.


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