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Nico: Daughter of Patient with Raynaud's Syndrome and Systemic Scleroderma


Flower for Nico by Shelley Ensz My mother was twenty-nine years old (now she is almost sixty one) when she discovered she was affected by Raynaud's Syndrome. Up until a few years ago that meant a lot of problems and often terrible pains in hands and feet produced by cold.

After that, the first toe and finger ulcers began, then it affected the esophagus lining, with reflux, so there was pain and small burns in her stomach, and ulcers.

The situation took a turn for the worse about three or four years ago. Now my mother is recovering in Milan, and going through a therapy (in my opinion not useful at all) with vasodilators. She is going through a situation that I would even say is "inhumane."

There is no hope for her. She has small cuts in her mouth and tongue that often prevent her from eating. She has no tears left, so she caught conjunctivitis and this does not even let her have her eyes open, and they are verifying the damage to her cornea. The volume of her esophagus has been reduced and thus she gets quite tired from eating, her teeth are falling out and she also has other problems because of this.

She is psychologically abated, resigned and terrified. But who would not be? And now they have found a spot in her lungs and they are afraid the damage has extended. Tomorrow she will get a CT scan.

It has taken me so long to understand how much she is suffering and I am afraid I have waited too long before deciding to take control of the situation and find a way out. This is about my mother, my family, she is a part of me and she is the dearest thing I have, even though I am married and have a wonderful dad. I know very well there is no cure, but I do not want to even think about the fact that there is no possibility of her living a dignified and human life!

She trusts the doctors who have been following her progress for years, but I do not think that is the right way. I could be wrong, it could be that my intervention is not exactly the best solution, but I cannot just watch this, I have to find an alternative.

I ask for someone who could help me in this search and moreover to give me information that could help me convince my mother of the opportunity to search for others, to convince her that there are some who will not consider her a "burden" but rather a patient and even more, a PERSON they can help.

I would like to try seeing Professor Matucci, as well as finding someone for my mother to talk to, someone who has seen him, (because she thinks it is a waste of time and money, considering we come from the North of Italy).

Maybe they can do nothing for my mother, but how am I to know if I don't try it? My only and greatest fear is to lose more precious time or getting false hopes. Another name I got is Professor Scorza from the Ospedale Maggiore di Milano. I will also try here.

I am willing to try anywhere, I beg you, help me.

To Contact the Author

Email: [email protected]
Story edited 01-25-06 AL
Story prepared 01-25-06 JTD
Story posted 01-28-06 SLE
Translated to English 01-25-06 AL
Edited 05-26-06 JW

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Story Translator: Alba León
(Italiano) Nico: Sindrome di Raynaud e Sclerodermia

(Italiano) Sindrome di Raynaud
(Italiano) Sclerodermia
Professor Matucci-Cerinic

(English) Caregiver Stories
(English) Raynaud's Stories
(English) Systemic Scleroderma

ISN Translator and Editor: Alba León

Alba LeonAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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