Rare Disease Day is February 29th, 2024, brought to us by the dedicated team at NORD (National Organization for Rare Disease)
As someone blessed and chosen to carry the cross of Rare Chronic Illness/Chronic Pain,
I also share in the suffering and the promise!
I am the mom of 2 adult children with IIH (Idiopathic intracranial hypertension).
Our middle child presenting at age 12 with a rapid illness/high fever and had a lengthy recovery in children’s hospital ICU.
No previous health issues.
In 2020, our oldest at age 23, woke up with a “cracked phone screen” in her vision and after months of testing required a brain stent.
(left sided transverse stenosis/papilledema)
No known previous health issues.
Our youngest 19, is symptomatic with some current elevated blood markers for chronic illness present; and is under medical care for vision issues as well.
I am also a rare disease/chronic pain/intrathecal pain pump patient that has endured 17 surgeries that has suffered much but also found much more in the strength to persevere in the power found only in our Lord Jesus Christ!
There is healing in the name!
I look very forward to my new body, but I have been brought forth as pure gold from the fire and will use my light to bring praise, honor, and glory!
God bless all that suffer, especially in rare disease.
Our family is following up very closely with our medical team for all our health needs and we appreciate all of your prayers, support, caring, and sharing!
Music:
Ave Verum Corpus Ovum in D major
by St. John’s College and Christopher Robins
Негізгі бет Stripes of Rare Disease
Пікірлер