Take our SMASH poll to improve SMA Syndrome research

Fill out this anonymous poll to provide our community with critical information about the management of this condition. Because SMA Syndrome is so rare, there is much we don’t know about it. Your insights into the management of this condition can be very helpful for others who are struggling through trial-and-error.

Name

First

Last

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Age

Sex

Female
Male
Other, or prefer not to say

Racial and ethnic background

American Indian or Alaska Native
Asian
Black or African American
Hispanic or Latino
Native Hawaiian or Other Pacific Islander
White

Height

Weight

What symptoms do you experience?

Nausea
Vomiting
Abdominal pain
Indigestion
Early satiety (feeling of fullness)
Unintended weight loss
Distention (swelling of the abdomen)
Pain or cramping in upper abdomen
Pain or cramping in upper abdomen after eating
Food aversion (fear or avoidance of food)

Are you able to burp?

No, I can’t burp
Yes, my burps are normal
Yes, I burp excessively

How many years have you experienced these symptoms?

Have you been diagnosed with SMA Syndrome?

How many years has it been since you were diagnosed with SMA Syndrome?

Have you ever been diagnosed with any of these related disorders?

Peptic ulcer
Gall bladder disease
Irritable bowel syndrome
Duodenitis (inflammation of the duodenum)
Cholelithiasis (gall stones)
Visceral neuropathy
Pancreatitis (inflammation of the pancreas)
Diabetes
Collagen vascular disorder
Chronic mesenteric ischemia
Gastroparesis (slow emptying of the stomach)
Acid reflux
Electrolyte imbalance
Malnutrition
Aspiration pneumonia
Hypokalemia (low potassium)
Oliguria (producing too little urine)

Have you had a surgical intervention?

Yes, but I’m not sure what type
Yes, duodenojejunostomy (connecting the duodenum to the jejunum prior to the constriction point))
Yes, gastrojejunostomy (joining the jejune directly to the stomach)
Yes, Strong’s procedure (repositioning of the duodenum to the right of the superior mesenteric artery)
No

What treatments have you found to be beneficial?

How has this impacted your quality of life?

Is there anything else you'd like to share?

Do you have any questions? (If yes, please include your email address)

For the newly diagnosed

Read our guide for the newly diagnosed to learn more about how to navigate your new reality.

Free resources

Puréed food shopping list

Diagnostic worksheet

14-day symptom tracker – coming soon!

The ten-point pain scale – coming soon!

Preparing for your doctor appt – coming soon!

Preparing for your surgery – coming soon!

Managing through diet – coming soon!

Long-term management – coming soon!

Coloring book – coming soon!

Cookbook – coming soon!

Yearly planner – coming soon!

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