#tetheredspinalcord

MOST RECENT

8. #Star- #STARsyndrome.
#Syndactyly, #telecanthus, #anogenital and #renal #malformations; Toe syndactyly, telecanthus, anogenital and renal malformations

STAR syndrome is a very rare syndrome (only 10 reported cases) that affects many parts of the body. "STAR" is an acronym for the primary signs and symptoms of the syndrome:[1]

Syndactyly - webbed or conjoined fingers or toes (the toes are particularly affected in this syndrome). Telecanthus - increased distance between the inner corners of the eyes.  Anogenital malformations - abnormal formation of the anus and/or genitals.  Renal malformations. - abnormal formation of the kidneys.

However, some people with STAR syndrome have had a variety of additional features affecting many parts of the body. STAR syndrome may be caused by a mutation or deletion affecting the FAM58A gene, also called the  CCNQ gene. In some cases, other features may be due to larger deletions that involve other genes besides the FAM58A gene. Additional features that have been reported include other #skeletal abnormalities, #hearingloss#epilepsy, #ocular #abnormalities#syringomyelia#tetheredspinalcord, and various other #birthdefects.[1][2]
Inheritance of STAR syndrome is X-linked dominant. The syndrome is thought to be lethal in male embryos; only females with STAR syndrome have been reported.[1] Treatment depends on the specific features and severity in each person.

#inktober2018 #medical edition! #khaotykartwerx #acrylicink

Today, the price of Tether's stablecoin (USDT) dipped lower than it has been in over a year, threatening to drop to an all-time low. According to CoinMarketCap, the digital currency, which is supposedly backed 1-to-1 by the US dollar, was being traded at just above 92 cents. As of press, the price has risen to almost 98 cents.

A mass exodus from the most popular dollar-pegged stablecoin Tether (USDT) has led to its devaluation against peer stablecoins.

USDT on Monday broke away from its historically tight link with the US Dollar to touch 85 cents across multiple crypto-exchanges. As a result, a substantial USDT volume shifted to other cryptocurrencies, including Bitcoin, raising their price in an otherwise bearish market. Among the gainers were also other stablecoins whose per token value advanced against the dollar – as well as the Tether’s USDT.

🍩 Jess (this am): Didn’t you tell them to leave the doughnut and they looked at you like you were crazy?

This is not an actual memory of hers, rather it’s a story she’s heard in the past 6 years.
And she was referring to today’s date.
6 years ago we were praying for a miracle. Some of you were praying on Jess behalf even though we never said how very serious the situation was.
The 6 time spinal cord repair site wasn’t sealing off in spite of the spinal cord patch, glue, and sutures and the leak was significant. They put Jess to sleep and said if it didn’t stop by a certain time then they were going back in to attempt a repair. We were warned what could happen if that were the case. (The resident seemed a bit unnerved. Dr Carson gave the order to wait and put her body at rest.) Jess slept, I sat next to her, people prayed, and her doughnut sat waiting.

The Great Physician healed the leak site.
Jess woke up 13 hours later having no idea of the passage of time nor what had been taking place.
She looked around, saw her waiting doughnut and said, Hey mom? Can I have my doughnut?🍩 God is faithful. #gracemoments
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#bloggermom #momlife #caregiver #tetheredcord #tetheredspinalcord #moments #johnshopkinshospital #drbencarson #greatphysician #grace #ourlife #realmoments #fridaymotivation #youmatter #disability #spinabifida #warrior #onthisday #faithmoments

If I told you my story
You would hear victory over the enemy
If told you my story
You would hear freedom that was won for me
If I told you my story
You would hear life overcome the grave
#bigdaddyweave #47xyy #tetheredspinalcord #arachnoidcyst #verticaltalus #bronchialpulmonarydysplasia

🍂 So many thoughts and memories... These next few days are the anniversary of both the beginning and end of Jess surgeries. 🙏🏻😢 Forever thankful for and to a faithful God who holds us.
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#mondaymotivation #tetheredcordsyndrome #tetheredspinalcord #awareness #spinabifida #spinalsurgery #johnshopkinshospital #childrenshospital #drbencarson #miracles #momlife #disability #awareness #advocate #moments #grace

We are never more creative then when we are in the midst of trying to survive something painful. We have to count on ourselves. We can have support, of course, but no one can travel your pain for you. You have to travel it on your own emotionally and this is how you heal it and come out the other side..........! #syringomyelia #tetheredspinalcord #raredisease #autoimmunedisease #beconsiderate #spreadawarness #instahealth #bekindtooneanother #weareallinittogether #wearenotgettingoutalive #helponeanother #spreadthelove #Awareness #rarediseases 💔💔💔

October is #spinabifida awareness month 💙 Here’s our little #spinawarrior
#spinabifidaocculta #tetheredspinalcord #lipoma #awareness

Tether Dominates 98% of Stablecoins’ Daily Trading Volume

So I decided on top of my busy schedule to do a Halloween series, I will post nothing but spooky pictures this month, although this is far from spooky, just cute. It’s also spina bifida awareness month so I expect lots of sharing from you guys to raise awareness on what spina bifida looks like for us and of course how it affects my sweet princess. I will do lots in my stories about spina bifida #spinabeautiful #spinabifidastrong #spinabifidawarrior #myelomeningocele #tetheredspinalcord #neurogenicbladder #halloweenphotoshoot

When you have to find a spot on the floor cause it’s too #painful to sit in a chair #😢 First RI #cle in four years!! Just wish I was able to concentrate on anything other than the throbbing #spinalpain #😩 #attorneyproblems #attorney #ethics CLE #tetheredcord #tetheredspinalcord #chronicpain #disabled #disability #disabilitylife #toomuchpain #hurtssobad #disabledlife #disabledwomen #disabilities #ouch

We are back and it feels like we just left. Two week (almost) follow up for little buddy. We are hoping to see a video today of Calvin's spine releasing in action. 🤞🏻
#infantilescoliosis #mehtacast #scoliosis #rissercast #curvycalvin #curvyandcute #childrensmercy #bentbutnotbroken #warrior #courageouscalvin #bodycast #sostrong #babylove #scoliomom #momblogger #scoliosisjourney #somuchlove #tetheredspinalcord #neurosurgery

"The wound is the place where the light enters you" Rumi
This sentence says a lot to me. Myanna is always that bright light. That joy. People tell me she shines from within.
She has scars, Ten of them, and a few are very noticeable. I used to look at them and feel sad... But I never want her to feel that way. Now, I can tell her about light. Gods light shining in.
She amazes me how she is so matter of fact. When someone asks her about her scars, she tells them exactly what each one is from.
She's resilient, strong and confident. Photo @masterclipz
#seetheworldthroughmyeyes
#differentnotless
#differencesarebeautiful
#insideallthesame #sensorygirl
#invisibledisability
#specialneedskids #autismwarriors
#congenitalheartdefect
#openheartsurgery #zipperclub
#heartkids #chdawareness
#heartprincess
#1in100 #heartwarrior
#raiseawareness #heartdisease
#chd #heartstrong
#myannasheart #heartsuperhero
#hearthero #chdstrong
#scarsarebeautful
#rockyourscar
#tetheredspinalcord #spinabifidaocculta

This was not meant to be my next book but when I saw it was about spinal injuries, surgery, recovery etc I just knew I needed to read it! #booksofinstagram #bookreader #bookstagram #bookworm #spinabifida #tetheredspinalcord #tetheredspinalcordsyndrome #booksbooksbooks #whatimreading #daniellesteel #winners

I saw my new allergist yesterday to go over the (literally 30+ tubes of) blood work we had done after the first visit. I was completely surprised to find out that I also have condition called Common Variable Immunodeficiency (CVID).
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CVID is one of the most frequently diagnosed primary immunodeficiencies (hence it’s relatively “common” as far as primary immunodeficiencies go), especially in adults, even though it occurs in only about 1:25,000 people. The condition is characterized by low levels of antibodies and immunoglobulins - components of the immune system that help fight infection. While thought to be genetic, the exact cause is unknown in most cases. You are born with the condition and it’s not acquired (unlike HIV/AIDS, for example, which you get) Symptoms can show up when you are a kid or later as an adult, and each patient can look very different - why it’s variable. It can also cause problems all over the body, and 25% of people with CVID have an autoimmune condition as well.
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For me I had recurrent ear infections as a kid as and would also get strep throat a few times a year, at one point monthly for a short stretch. I have also had swollen lymph nodes with no real cause determined. CVID is likely the reason for both of those, and may also be contributing to my intestinal issues and fatigue. Hopefully these will improve at least a little with treatment.
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The specific treatment for the condition is with IV immunoglobulin (IVIg). Basically they take blood from a large number of people, mix it together, and remove just the immune components (IgG). These are then transfused into the patient to replace some of the ones they are deficient in. The blood work will help us select the right IVIg to replace what I need. Unfortunately the immunoglobulin only last so long, so I will need to get an infusion around once a month for the rest of my life. At least I can do it at home. Replacement of some of the missing components lessens the condition, so the right IVIg should help and leave me feeling better. I’m sad about having another diagnosis (that I didn’t even expect) but at least this one has a treatment. The adventure continues!

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