The Griffin Adventures: ACHALASIA update.

Sunday, August 21, 2016

ACHALASIA update.

Dear friends,

I'm sorry I haven't written and given you an ACHALASIA update. I had surgery for the fourth time since October to try and eat properly on Friday. It appears as though I am either allergic to Botox or anesthesia. Last time my lip was numb for 17 days and we dismissed it. This time my face, neck and upper back has a type of hemorrhage under the skin that looks like a rash. My eyes are jaundiced and bloodshot and I have had a small headache and general pressure feeling. Thankfully it is not a rash that itches. I told the doctor it feels as though I have done 1000 sit-ups but otherwise, I am in no pain to speak of just discomfort. That is to be expected from injecting Botox into my esophagus. I had the procedure done in Birmingham but spent the day with Dr. Christianson at Marshall South yesterday. He took excellent care of me and could only find one documented case of what appeared to be happening to me. It is hard to rest so I am up writing to you my friends. I would appreciate your prayers for me and everyone who suffers from ACHALASIA. My sweet Ian asked why God allowed ACHALASIA to happen to me and my answer is always, "Why not me?" With friends and family support, we are beating this together. Thanks for all the milkshakes, soup and ice cream you have delivered throughout this journey. Chocolate seems to go down too! #luckyme #blessedwithfriendsandfamily #ineverythingpraiseHim

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The Top Ten Things You Should Know About Fragile X Syndrome

By Mary Beth Langan and Sally Nantais

1. It’s genetic.
2. If a woman is a carrier, she has a 50/50 chance of passing it on to her son(s) or daughter(s). 1 in 100 to 200 women are carriers **.
3. If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. 1 in 800 men are carriers.
4. Fragile X Syndrome does not discriminate; it doesn’t care which ethnic group you belong to.
5. Fragile X Syndrome is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).
6. Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.
7. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.
8. There are minor physical traits noted in many persons with Fragile X Syndrome, but not in all. These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.
9. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and PCR analysis. Inaccurate results occur far too often with the generic chromosomal panel. Test for FXS to obtain a diagnosis or to rule it out. If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.
10. Where to go for the most accurate and up-to-date information on fragile X syndrome:http://www.fragilex.org/, the National Fragile X Foundationhttp://www.fraxa.org/, Fraxa Research Foundationhttp://www.conquerfragilex.org/, Conquer Fragile X Foundation** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.html
Mary Beth Langan and Sally Nantais are both Fragile X Syndrome carriers; each has a son with Fragile X Syndrome. They can be contacted at mblangan@hotmail.com and sally_nada@juno.com