Rachel M.

“Seeking Out Truth and Support”

Rachel M.’s daughter lives with IgA nephropathy

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“Your instincts will be right almost every time”

Dear Rachel, You are so tough and smart. Your childhood medical challenges will help you later in life—you will be able to advocate for your daughter’s health and make critical, affirming decisions. I know you think you won’t be able to have children, but you do. Two wildly wonderful girls with a very nice man.

But here is why this letter exists. Your firstborn will be riddled with autoimmune diseases starting around age 7. By age 12, both her pancreas and kidneys will have been attacked by her own body and no longer work the way they are supposed to. There is no cure for these diseases, but the technology and progress are immense. It’s not your natural default but keep hoping.

You are going to feel responsible and like a complete failure. Your beliefs in the human body and the power of food will go down the toilet but you will keep pushing. You end up leaving your immensely successful career to support Vivienne and to make sure Eleanor does not get lost in the constant focus on her sister’s health.

The most meaningful thing I can tell you is to give yourself grace. The medical community will not have all the answers and will not always steer you in the right direction. Your instincts will be right almost every time.

The parent and nonprofit communities hold truth and support. Seek them out first and invest time in podcasts and stories. Find doctors who are open to alternative conversations: don’t settle. It’s a balance between scientific advancement and functional medicine.

What you do by researching, participating, cooking, removing toxins, being a contact for other parents, managing the diseases, appointments, and raising strong, intelligent and beautiful girls is profoundly difficult and exhausting.

Stay true.

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